Amazing Amelia

Playdates, Halloween and More...

2011-10-31T22:53:00.000-04:00

Yes, she IS a Rockstar!!!

Amelia had her first official playdate yesterday. We met up with one of her schoolmates, who has a typical twin sister -- so it was doubly fun!!! Nestor and I have become friendly with their mom, who is just terrific, so we were really happy to hang out with all three of them. We met at Brandon's Village in Calabasas, which is a universally accessible playground. It was our first time there and it was really awesome! There are ramps to every part of the structure and we were able to take Amelia all over the place. Their favorite was thing there was this pole with a button you can push to create a cool mist of water. It was in the upper 80's out here and we had spent some time in the sun, so it was wonderfully refreshing!!! The girls LOVED it. Here's a link to the video we took. *Turn down the volume on your computer because I am WAY too loud. Sorry, I'm still getting used to the video on my new phone!

Today we went to Amelia's school for their Halloween Parade and class party. It was adorable! Amelia was dressed in a festive outfit to show off her Halloweeny spirit. After the big parade, the kids all went trick or treating from room to room and then Amelia was treated to a big plate of frosting from the big Halloween cake her teacher had brought in. She had quite the amazing time with it!

Amelia at the parade in her stander

Concentration is the most important part for destroying a plate of icing!

Testing the icing to make sure it's okay to proceed

And it's good!!!!!!

And not to be ignored...Mommy went as an 8 Ball!

We're 2 weeks away from the big day! And yes, I am getting a little excited/nervous/anxious/crazy!!!!!

Fun at School

2011-10-13T13:47:00.000-04:00

Playing in the pool!!!

Looks like fun, right?

These are pics of Amelia in the "swim program" at school. It looks a little more like sitting in a really cool jacuzzi, if you ask me! There are jets in there and the water is shallow. All her little classmates are around her playing....very cool stuff! Amelia loves the water so it's really exciting that she'll be participating in this every Wednesday of the school year. Of course, nothing is ever easy and I had to get letters to fight the school doctor who wasn't going to let her participate. Apparently, in the past, other parents of kids with Gastrostomy tubes have sued the district because their children developed an infection around their G-tube sites after being in the water. We were told that each class has a freshly cleaned tank and water to go into. I had to write a letter stating that I accept all responsibility for any complications that may arise (uh...didn't I take that oath when I gave birth to Amelia??????) and that I had received permission from Amelia's Gastroenterologist that it was okay for her to participate. I get it. Everyone needs to protect themselves these days because no one ever wants to take responsibility for anything. The great news is...she got the ok and it's all good times and "slip and slide" fun!!!

Nestor and I have been shlepping Amelia to all her specialists. It's been sooooo busy. In the last 2 months we've been to her pulminologist, neurologist, opthalmologist, dentist, gastroenterologist, ENT, had her MRI done, pediatrician for 6 shots:( -- she was SUCH a good girl and a check-up and lastly, a feeding evaluation done at Children's Hospital. This has been on top of all her school and therapies. We're exhausted! Good news is, it's done. Now we have a month to wind down a little and turn our focus on getting things ready for this new little critter -- who will be invading our house mid-November. I have a c-section scheduled for November 15th...so unless she can't wait, we'll be seeing her just before Thanksgiving. Is it mean to have the nickname "Butterball" already picked out?

My folks came into town a couple weeks ago. My mom, sister and dad (yes, he gets credit because he shlepped the boxes to the post office!) worked very hard going thru the hundreds of bags in my folks' basement and picking out the girl stuff 0-12 months, to send out here to me. So much work sorting thru, but so much fun!!!!! Very exciting stuff. Also, the big dilemma has been to ship, or not to ship -- the big baby gear that is. The clothes were a no brainer, but the baby gear is another story. My mom has strollers, high chairs, bouncers and swings in her basement. The question is....how expensive is it to replace these things here in CA or is it cost effective to ship it all and pay hefty rates? While my Mom and Dad were here we went to Babys R Us and did some calculating. Well, somehow we hit some amazing shopping kharma, because they had tons of stuff on clearance PLUS, a salesperson walked by us and mentioned that everything was going to be 25% off on Friday (we were there on a Wednesday). I mentioned that the things we were looking at might not still be there Friday to which she said "put it on hold and call tomorrow (Thursday) and ask them to put it on hold for another 24 hours and you'll be in on Friday to pick it up!" GENIUS! And somewhat sneaky....but who am I to argue with a brilliant plan? So that's what we did. We got a high chair, bouncer, excersaucer, glider with ottoman and a sweet little chandelier for Amelia's room. We already have a crib, pack and play and infant carrier from Amelia and I was able to pick up a snap and go stroller off of Craig's list for $30. So we're in really good shape! Now all I need is to pack my bag for the hospital. Oh, and get everything up to the house from the garage...and wash the hundreds of baby items in Dreft...and put the crib back together...and wipe everything down that's been sealed up in the garage....and, and, and......:)

The peace of mind that is helping me thru....Amelia's BFF, Jozette -- who was her respite worker in NY, is coming in the Saturday before the scheduled c-section and staying until just before Thanksgiving. Jozette has an extraordinarily demanding job at UCP, NYC managing adult residences there. She is taking her vacation time to come out west to be here to take care of Amelia while I am in the hospital. Getting Amelia up in the mornings, doing her treatments and packing everything up for school, taking her to school and picking her up. Jozette is an angel! That's all I can say. She is member of the family -- and we are so touched and grateful that she is going to be here. I know it will help Amelia feel grounded when I'm not here. Jozette is so loving and productive, I know she's going to make the transition as smooth as possible. And after that, my mom will be coming out to help. We're so lucky to have such an incredible support system. Truly, truly blessed.

First Day of School

2011-09-08T13:22:00.000-04:00

Well, Amelia had her first day back to school yesterday. I really wanted to get pics and video to share...but she was not such a happy camper yesterday. Not sure if it was getting up so early (she had been sleeping in until 7:45/8am every morning!) or just the frantic pace it takes to get her up, dressed, respiratory therapy done and out the door to drive to school. In any case, NOT HAPPY! I did take some video, but it's pathetic as she is kvetching the whole time!!! Today was much better, so I'll try to take some happy video/pics and post them soon!

Nestor and I are really excited for this year because Amelia has been placed in a higher functioning kindergarten class. Many of the kids are ambulatory, some are slightly verbal and they are all very engaged. It's so terrific to see her around a bunch of kids who are interactive with their environment. Not necessarily with each other at this point -- but the potential is there!

The other fantastic piece is that Amelia is with her Pre-K teacher, Carolyn again who is just phenomenal!!!! She goes so above and beyond what is expected and that's such a blessing in any classroom setting. Also, the support staff, meaning all the classroom assistants are the same and the biggest thing -- Amelia's healthcare worker, Esther is with her again this year! Amelia is absolutely crazy about Esther and vice versa! Esther works her like no one else! She has high expectations and doesn't take any baloney from Amelia:) Esther treats her like a regular kid and Amelia definitely steps up to the plate when Esther's around. It's great to see.

There's definitely a settling in process though. Amelia's school day is now much longer, from 8:15am to 2:40pm. The glitch is that she still naps, sooooo that's a little hard. She came home yesterday and was wrecked! It was really hard to get Amelia to nap -- but totally necessary because she was in complete meltdown mode. Also, it was so late in the day I was afraid to let her sleep too long, but things were so "fly by the seat of our pants," unfortunately, we did let her sleep too long (about 50 minutes) and she would not go to sleep last night. Nope, not having it! Last night I think she finally conked out around 10:30pm (yikes!). The really cute thing that happened though is that I laid down in her bed with her for awhile trying to soothe her. I had my big pregger belly to her little back and wouldn't you know it? Amelia's little sister, from deep inside me, started kicking Amelia in her back! Obviously, they were little thumps, but so cute! I was just lying there in the dark, holding Amelia while she was settling down, with a huge smile on my face, while my belly was wrestling around with her future big sis! I just kept thinking -- well, here we go! The little one isn't even here yet and she's already instigating!!!! Life's about to get a whole lot more interesting!

P.S. By the way, the MRI went great last week. Thanks to all for your support! We'll be seeing her neurologist at the end of September so we won't really know much until then.

MRI Tomorrow

2011-09-02T01:36:00.000-04:00

After many cancellations and reschedulings, we are finally taking Amelia in for an MRI brain scan. She hasn't had one since she was in the NICU. It may sound odd that we haven't followed up on an MRI -- being that we have a child with neurological issues, but it hasn't really been my priority. Amelia's MRI from the NICU never showed anything. Nothing. Big fat zero! She is who she is...but no tests, scans or otherwise have ever come back as anything but....normal.

I always cringed at the idea of putting Amelia under anesthesia and exposing her to radiation in order to see some images that are never going to make a squat of a difference in her life. If Amelia was having seizures, this information would be important. If she was regressing and we couldn't figure out why, this would be critical. But as things are today, it's not going to change her plan of care. It's not going to give us some magical answer that will give us the knowledge we need to "heal" her. It's just a gathering of information. Nothing more.

So, why now? Well, she's five. Also, we have a great neurologist at Children's Hospital (CHLA) who thinks it's time. She posed it simply to us: "She hasn't had one since birth. It's time to have a new MRI done so we can have a conversation about it." I don't know why it made so much sense to me when she said it this time, but it did. I felt like, ok. Let's do this!

It also helps that Amelia has been very stable these past few months. Since she had her ear tubes replaced in April, she's had just a sinus infection over the summer. Otherwise, she's been healthy and thriving -- although, I will say LAZY!

Must be the mood in the house with me on "low activity"=sitting on the couch! And Nestor...well, in a nutshell, he climbed up on wall by our front gate to fix a light sensor, fell and has the "rolls royce" of ankle sprains. So he's been lying on the couch next to me. Together, we're about 1/2 a parent! Poor little Amelia, her parents are such fuddy duddys! Anyway, Nestor's on the mend and I am in a temporary state of being...so we'll be back and better than ever in no time.

Meanwhile, have a great Labor Day "last weekend" of summer. Hope your hot dogs are perfectly charred and your lemonade is cold and sweet!

It Takes a Village

2011-07-21T21:02:00.000-04:00

Amelia just got off her second round of antibiotics for a recurring sinus infection. Poor thing was MISERABLE!!!! She seems to be much better now and her system is regulating itself (you know, digestively speaking!).

Summer school started a couple weeks ago and will be finishing in a couple of weeks. Her healthcare worker, Esther, who is with her during the school year has been by her side all summer and Amelia is so happy to be with her. She looks for her every morning and carries on until Esther arrives. Esther is just so good with her. She knows Amelia's sounds and personality so well and has been able to push her further in her communication skills. For example, Amelia has a button on her cheap talk at school to use the potty (their facility is really well equipped -- I'm working on getting a toileting system here at home for her) and Esther has figured out how to figure out if she is finished or not. Esther will ask her if she is finished and put her hands out, with her fingers touching (this how you begin to make the ASL sign for "finished"). If Amelia is done she will put her hands on top of Esther's hands and the two of them will complete the sign by pulling their hands and fingertips apart and saying "finished". If Amelia isn't done, she'll push Esther's hands away. It's quite amazing that they were able to figure this out! We're incorporating that for everything now. Giving her a chance to let us know what she wants. Not easy with a non-verbal child!

I am also in the process of getting Amelia some much needed adaptive equipment. The toileting system, which I mentioned is one. Also, a new stander (Snugfit Gecko Upright Stander, size 2) and a tie down stroller for the bus (The New Bug Seating System, with a 4 wheel base). Getting all the sizes, colors, options and accessories sorted out was a little daunting, but it's done and now we're just waiting for the letters of medical necessity to be reviewed by the insurance company so we can move forward with the vendor, ATG Rehab -- who have been wonderful to work with.

As for me, well, I look like I've swallowed a watermelon -- whole! I'm getting rounder by the minute. We've hit some complications -- baby is fine, thank goodness! I am 22 weeks and it is too soon to make an official diagnoses -- it's not usually done until 26 weeks, but looks like I have placenta previa. That means that the placenta is on top of my cervix. This makes me prone to bleeding, which is what happened last friday -- sending us to the OB. There was a small tear in the placenta and a tiny blood collection in the uterus, which is what caused the spotting. I was put on bedrest for the weekend and went back to the Dr. last monday to follow up to make sure the collection was getting smaller not larger. The blood collection is gone! YAY!

However, the snafoo for us is that I am now ordered by the Dr. to "take it easy!" Lay around, no working out, nothing stressful and most importantly, no lifting anything over 10 pounds. Uhmmmm, Amelia weighs 50 pounds! My OB said that I've had 1 bleed, 2-3 bleeds and I'm in the hospital for the rest of the pregnancy!!!! So my poor husband has been on call 24/7 when Amelia's nurses aren't here and he has been a doll! Honestly. It doesn't surprise me, but boy o boy....it must be annoying to hear me every few minutes "Nestor?! Can you come here and....." He's been a real sport!

I called the insurance company, Anthem Blue Cross and our nursing agency, Maxim last friday to start the process of getting more hours of homecare nursing in place while it wasn't an emergency. As the primary caregiver, I can't take proper care of Amelia by myself and if Nestor isn't here, I need some more help! Imagine our surprise when Nestor got a call that he was going to be flying out to North Carolina today to do some reshoots on a pilot. Yesterday. At 4pm. Can you say WHAT???????? I went into panic mode and called EVERYONE!!!!

I am very fortunate to have terrific people around me -- so here how it went down. I called Maxim yesterday, right away and found out that I needed to get a prescription from Amelia's pediatrician. Her pediatrician isn't in on wednesdays so I knew that was my first call this AM. Because of the placenta previa, Blue Cross assigned me an OB case mgmt. nurse to oversee the rest of my pregnancy and make sure I'm getting all the care and services I need -- so I put a call into her VM yesterday, to call me today ASAP! And the rest went "more awesomely" than I ever could have imagined! Usually it takes 5 days for BC to evaluate and determine a request for more hours of nursing -- but this was a bit of an emergency, so they sped it along. Might have helped that I reminded them that if something happens to me they are going to end up paying for my stay in the hospital for 3.5-4 months and 24/7 home nursing for Amelia! I got a call around 1:30pm letting me know that the approval had gone thru! WOW. Just WOW.

Nestor flew out at 6:30AM this morning. So, our neighbor, Chuck came over at 8AM and transferred Amelia from the house to the carseat for me. I called the school on the way over and an attendant met me outside and took out Amelia's 45lb. stroller and transferred Amelia into it. Then at pick-up, Esther walked us out to the car and did the reverse. When I got to the house, Amelia's nurse was supposed to be here -- but hit traffic and texted me she was on her way. In the meantime, Chuck's wife peeked out and asked if I needed Chuck again..."yes" I said with a sheepish smile. He came over and transferred Amelia back to the house. Then Amelia's nurse showed up and all is right with the world! We'll do the same tomorrow and Nestor will be home Saturday night. *breathe*

It takes a village people! It takes a village.

Some Mothers Get Babies With Something More

2011-06-27T13:13:00.000-04:00

by Lori Borgman| Monday, May 12, 2002

I've read lots of these lovely essays, here's one I hadn't seen before that was posted by a Mom on FB. It's very thoughtful. -D

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Busted

2011-06-04T20:01:00.001-04:00

So, this morning Nestor and I went to the LA Premiere of the amazing documentary, "Certain Proof: A Question of Worth." It is a a tremendous project that gives a voice to non-verbal kids like Amelia.

At the end of the film there was a Q&A with the Director, Ray Ellis. A question was asked by an audience member and when I looked back, I saw that it was a father from Amelia's school, who I used to see all the time in the parking lot at drop-off in the mornings. I was a little surprised to see him in West Hollywood on a Saturday morning, so far from the Valley. On the way out we stopped to say hello to him and his wife. I hadn't seen him in a long time and he mentioned that his son is now in a different school. He mentioned that he still reads my blog, to which I said "well, it's been awhile since I did an entry." He agreed. Oops! Busted! I love this blog and I have been very lazy lately in posting.

I plead morning sickness. Nausea. Exhaustion. Yes...Amelia is going to be a big sister in November. We are very excited and of course, feeling a bit cautious. Amelia has no idea what she's in for. I keep telling her that she's going to be the best big sister and I know she will be. She is all love -- so how could she be anything else! I am having an amnio on Wednesday -- so keep us in your good thoughts!

Also, Amelia's IEP. Being put on the waitlist (#204) of the inclusion charter school, Chime -- which we are in love with and were hoping against hope that Amelia might get into for Kindergarten. Running to GI, ophthalmology, speech therapy, occupational therapy, physical therapy, OB (for me!) appointments. We've had some out of town company -- which was spectacular!!!! And the rest is just general crazy life!!!!!

Amelia's latest thing: lastnight Nestor and I went to see "Bridesmaids" (so fun!). As we were walking thru the gate to come into the house, we could hear Amelia hysterically crying from outside. We came in and she was in a full-blown state. Big tears and huffing and puffing. Her nurse said that it had started a few minutes ago right after she hooked up Amelia's dinner feeding. At first I was sure that it was the cartoon on the TV. She can be somewhat temperamental about it and seemed to be reaching toward it. But huge tears and hysteria? Didn't seem right. As I went on the other side of her, I was able to see that she was pointing to the big cup next to the TV that holds an assortment of lollipops. In particular....the big Mickey Mouse eared lolly. We had given it to her a few days before, but because her secretions had been thick the past few days (cold or allergies? not sure!) lollies were off the list for now (aspiration risk). But seriously...she had stated her case and WON! Out came the lollipop and she was absolutely silent for the rest of her feeding. Joyfully glowing in the sticky residue of the pop. It was so incredible to see her fight so vehemently for what she wanted and thank goodness we were able to figure it out. It is so frustrating for us, but just imagine how Amelia must feel. She has been reaching for the lolly at each feeding now. I love it! She is associating a food (even if it is a lollipop!) with her GT feeds. Can you imagine never having eaten food -- for your whole life? Amelia has no real relationship to food. I hope this is another leap for her. Small steps are enormous in her world...and in ours!

Enjoy it, my girl! You deserve it!!!!!!

"What are you looking at?"

Yummy:))

All's Well at the OK Corral

2011-04-11T21:11:00.000-04:00

School picture 2011

Just wanted to give an update. Amelia's surgery went well last week and we're going to be seeing the ENT this week for a follow up. She still seems to be having sensitivity with the right ear...but I'm hoping it's just taking a few days longer for it to heal up. Anyway, she seems to be happy and enjoying her new ear tubes. Maybe it's because she got to watch A LOT of TV!

On another topic, we went to see an amazing augmentative communications specialist a couple weeks ago. Amelia did really well on her IPad and worked especially well with an App called "Proloquo2go." It's $189.00. The specialist said to me "I know it's really expensive!" to which I said "Ummmm....if my child is going to be able to speak to me with it...it's priceless!!!!" Perspective is everything friends!

The Same Tune

2011-03-31T00:32:00.001-04:00

So....last night was one of those nights. It started when Amelia was on the feeding pump. She had too much gurgling going on and I knew I wasn't going to get much sleep. I looked Amelia in the eyes as I put her to bed and I think she knew too. The first wake-up was around midnight and kept up about every 45 minutes until 3:30am where I got my best sleep of the night, until 6am. There was lots of coughing, a big ol' runny nose and lots of thick yellow secretions. Fun. I must have switched out the blankets I had under her about 7 times throughout the night and suctioned non-stop.

When I finally got her out of bed and into her stander for her respiratory treatment it was a relief. You know what I mean? It was that feeling of "Well, thank God we got thru that crappy night and now we can get on with the day and figure this thing out!"

At the stroke of 8:56am I called the Pediatrician's office and miraculously they picked up (4 minutes early!) and gave me an appt for 10:30am. The receptionist who picked up calls Amelia the "Subway Baby" because the first time we were taking Amelia to this Dr.'s office I was getting directions from her to the office and she told me to look for the subway on the bottom level of the building. Having just moved to LA from NYC, I was bewildered and said "You have subways in LA????" She replied "Of course!" That was the moment we both realized she was talking about the sandwich shop and I was talking about public transportation!!!! It endeared us to her. Hey, if it gets me a better appt, so be it!

I gave the whole rundown to the Pediatrician, she took one look in Amelia's ears and informed me that she has big, double whammy ear infections. Back onto Augmenten (just got off a week ago). Believe it or not -- the timing couldn't be more perfect!

A few weeks ago I scheduled surgery for Amelia to have tubes put back in her ears next Tuesday. It will be her 4th set. She's had about 4 serious infections in the last 3 months, so it seems pretty clear that it's essential for her to stay well. Had this newest infection taken a few more days to surface, we would have had to cancel -- but we have 7 days. That's easy. YAY! Never been so happy to see an easily-fixed-ear-infection.

So that's the deal. Getting this girl into fighting shape for Tuesday. Tomorrow we're off to CHLA to get the go-ahead from her new Pulmonologist, Dr. Platzker. Good news is that when our Ped. listened to Amelia today she said her lungs were perfectly fine. Ahhhh, music to my ears.

Certain Proof: A Question of Worth

2011-03-20T15:25:00.000-04:00

Tomorrow, Monday, March 21st @ 1pm EST, I will be Guest Co-Hosting with Tara Ecklund on Family Network TV on Blogtalkradio. We will be interviewing the filmmakers, Susan and Ken Ellis of Footpath Pictures about their full length documentary "Certain Proof: A Question of Worth" and Dr. Karen Erickson, Yoder Distinguished Professor at UNC, Center for Literacy and Disability Studies. Their film is so provocative and important. It really hits home for me.

To watch the trailer of "Certain Proof: A Question of Worth" click HERE.

To listen to Family Network Radio on Blogtalkradio click HERE.

This project was brought to Susan and Ken Ellis by New Voices Foundation. New Voices wanted the Ellis' to create a film that would bring awareness to a population who is largely overlooked and misunderstood because of their physical and communication limitations.

To watch the "New Voices" project click HERE.

Personally, we are just at the tip of the iceberg with Amelia and figuring out all the paths and battles ahead of us. Amelia will start Kindergarten in September and I know things are going to become more challenging the bigger she gets. I know how important it is to find a strong community of support for us. I am hoping to help those who are coming up behind us...and seeking knowledge from those who have "been there , done that!" It's so important to know what to expect so you can be ready. Sadly, it's anticipating your oppositions move before they make it so you can be ready to defend what you have (ie. therapies, adaptive equipment, nursing, medications, DME -durable medical equipment, teachers, schooling, aids/assistants, oh the list goes on and on!).

Thanks for listening and please send feedback! I love hearing from you.

Family Network TV

2011-03-03T22:23:00.002-05:00

**BREAKING NEWS** Being a celebrity family doesn't immune parents from having a child with additional needs. Nestor and Debbie Serrano will be our guest to share their journey with their amazing daughter Amelia. Check out Debbie's blog at http://www.amazing-amelia.blogspot.com/ You'll recognize Nestor Serrano from countless TV shows and Major Motion Movies. As recently as his role in "Secretariat" Also SPECIAL co-host Marianne Russo founder of The Coffee Klatch! http://bit.ly/hw9eMb

Nestor and I will be doing a live show on Saturday, March 5th. Join us!
Click here to get to the show!!!!

Joe Mantegna: A Prayer from the Bench

2011-02-23T16:06:00.002-05:00

Our friend, Tim sent this to Nestor yesterday. It's always captivating to me to hear other special parents' stories. To hear about the very beginning, the uncertainty, then the dust settling and finding "normal," your normal -- is comforting and inspiring to me.
I was particularly moved by the end of the article -- let's face it, I was mush! I've always felt this about Amelia but never found the words to articulate it. Beautiful sentiments, truly.

Joe Mantegna: A Prayer from the Bench

Stories: Everyone's Got One

2011-02-08T14:45:00.000-05:00

Amelia is great and everything is going well with her. Lots of wheels set in motion for her including: getting thru a Neurology appointment last week, where we met her new neurologist at Children's Hospital and set up an MRI for her (hasn't had one since the NICU) for the end of February. Met with LAUSD in informal "Due Process" and settled for an hour of Speech and Occupational Therapy weekly, outside of what she is receiving in school. And we are on the hunt for a medically based Feeding Therapist, which Amelia's former OT (the fabulous Debbie Rabin), is helping me out with. And lastly, she will continue with her PT 2x's weekly at Joy for Kids. We have an appt. with Amelia's new pulmonologist tomorrow at CHLA. So things are finally falling into place out here.

Today I am sad. So sad.

My mom's oldest girlfriend has been battling cancer for years and years. She is a tough broad and has overcome every bad prognosis doctor's have thrown her way over the years -- with a huge smile and the sunniest attitude you've ever seen. She is the epitome of grace. Her body grows tumors. Lots of them. She has had so many surgeries I've lost count. Yesterday was the day they were going in to do another surgery. Sadly, they opened her up and closed her right back up as quickly, unable to complete the surgery. This was one of everyone's, especially hers', greatest fears.

My mother's friend and her wonderful husband are huge constants in my life, whom I love very, very much and have known forever. We've taken family vacations together, had countless dinners together and every time we're in town, without fail -- they (and really, all of my folks' dearest friends) make a point of coming over for a visit. I am so blessed to have them as solid role models. For those who have "Team Amelia" t-shirts -- she was the source!

We also found out yesterday, that my sister-in-law, will have to undergo chemotherapy. Several weeks ago she had a mass in her lung biopsied (she was never a smoker, mind you) and it turned out to be malignant. She had a surgery a couple weeks ago where they removed the upper lobe of her lung, and several lymph nodes that were suspicious. Her prognosis is good, so we are all very grateful for that.

Time marches on. Nestor and I have our story. Amelia is a huge part of that story and all the things that can and will happen. We have a child with special needs who will depend on us for a very, very long time. But we all have special needs. We all depend on each other for a very, very long time.

I am so lucky to have two parents, who have each battled cancer and won, victoriously.

I have a child who overcomes odds everyday and keeps fighting.

I am sad for the stories, but I am lucky to be a part of those stories and I am so grateful for all the blessings.

Dearest Amelia

2011-01-24T13:34:00.000-05:00

Happy Birthday to my littlest love. You have taught me more in five years than most people can teach in a lifetime. Thank you for making each day a day filled with love, joy, laughs and tenderness. With all the challenges you face each day, you greet them with perseverance and spirit. Daddy and I have always said that despite your struggles -- you are the sweetest and easiest kid alive (we're not biased or anything!). You have grown so much this year, both physically (oy! my back), emotionally and cognitively. We are so proud of you and all of your tremendous accomplishments -- no matter how big or small they may be.

This has been a big year for us as a family. Big move to LA. Getting your own big girl room. Starting a new school with new friends. Taking a few airplane trips -- winging back and forth between the coasts. Getting through several colds without antibiotics!!! (HUGE!) Using the potty like a big girl. Taking the lollipop from my hand and putting it directly into your mouth and holding it there all by yourself. You're walking more, crawling more, playing harder and showing your independence around every turn. You are more vocal when you're happy, sad, frustrated or struggling. You dance all the time when you're feeling happy and it makes everyone around you happy (although there are the moments when we're pretty sure you're going to bang your head or tip over your chair/stander and our happiness changes to horror as we beeline toward you -- can't tell you how many of Amelia's nurses have had near heart attacks watching her dance!) You hug and kiss us all the time -- which are THE BEST hugs and kisses I've ever gotten! And yet, you are still easily calmed by Baby Tad -- nice to know some things haven't changed.

You are so loved, my Amelia. Always know that you are the most loved little girl!

With all my heart and soul HAPPY BIRTHDAY ANGEL!!!!!

Yes, it's blurry -- but when you get a smiling pic, you have to share it!!!!

Amelia loved putting the balloon to her face and squishing on it!!!

Thanks for all the balloons Auntie Colette!

(like 50 helium balloons! It was gorgeous!)

The famous ice cream cake

Amelia with Patricia, her nurse, Mommy and Daddy just before singing "Happy Birthday"!

Amelia and Max

2010-11-29T00:32:00.000-05:00

Here are the photos of Amelia with Max, our cousins' dog. It's the first time I've ever seen her take any interest in an animal. It's so cool!

Take note of Amelia's new shoes and a BIG THANK YOU to Bubbie and Zadie for early birthday/chanukah gifts. They're actually orthopedic shoes that typical kids in Poland wear. There are numbers on the bottoms and as they wear away the numbers doctors/therapists can tell whether the child is supinating or pronating and there are inserts that you can buy to put in the shoes to correct the child's gait. Amelia's PT uses them with the Therasuit Therapy that Amelia receives 2x's weekly. Amelia walks really nicely in them and can't turn her ankle in them. They're pricey but really easy to get on and off, comfortable for her to wear all day and quite stylish, I think! If you're interested in them go to the site www.ablegaitor.com.

What's New?

2010-11-26T20:15:00.000-05:00

Happy Thanksgiving to everyone. This is the first year in a long time that we weren't trekking from Nestor's family in NJ to my family in MD to be with everyone at once. Very strange. Instead we drove about 3 minutes to Nestor's cousin's, The Rosario's house and had turkey day with them. It was truly delicious and we had a wonderful time. The turkey was tender and juicy, the mashed potatoes and gravy smooth, the pumpkin pie was almost as good as my homemade (altho I think Nestor was just being kind because he kept saying "there's just some flavor, some spice in here that is spectacular! I've never tasted anything like it in pumpkin pie"), hmmmm and the company was outstanding. Anywho, it was the perfect new tradition for our new hometown. I am so thankful for our family and friends -- here and across the country! I thought of everyone like crazy yesterday.

So yesterday I was talking to my folks (they each pick up an extension and it usually results with someone not being able to hear well, or one talking over the other -- tons of fun) and of course the conversation eventually rolled around to shopping. This is the part where my father usually says "well, anything else before I hang up and let you ladies talk?" Only this time he said "is Amelia doing anything new?" To which I stopped in my tracks and thought for a half of a second and said "yeah, actually, she is." I then went on to talk about how Amelia seems to be demanding a little more from the world around her and responding to it more than she used to. For example, when she's on the feeding pump, sitting in her chair and watching her cartoons and I sitting next to her reading a magazine, she'll reach out and pull my shirt or arm or hand to her -- demanding my attention or giving me a hug or kiss. Also, Amelia seems to be a much easier audience than she has ever been. She laughs and reacts much more with a lot less effort on my part (for those of you who don't know, it's called "The Mommy Show" and it's the ridiculous things I do desperately trying to get a laugh or smile from her). It's very exciting!

Last night at dinner we all encouraged Amelia to pet The Rosario's family dog, Max and she did. The difference is that she really reached for Max. We all laughed and encouraged her some more and she reached out for Max again and again and again and again. We couldn't believe it. She was actually reaching out for him and really playing with Max's fur. We've been around a lot of therapy dogs, regular dogs, cats -- Amelia even used to have horse therapy (Hippotherapy) and has never really bothered with animals before. This was the first time I've ever seen her really interested in an animal. I think there's a lot to be said for how she's beginning to view the world outside herself and her toys.

But I have to say that one of the most remarkable moments to date happened this afternoon while Amelia was on her feeding pump for lunch. So let me set this up by explaining that Amelia's nutrition is 100% via her gastrostomy tube. She has a high risk for aspiration and chronic pnuemonia's due to aspiration of her own secretions. So although I love giving her flavors of food (she had literally a drop from the tip of my finger of gravy and cranberry sauce last night at dinner, which we wipe out of her mouth after with a cloth) and we try to give her a lollipop 1x daily. It really thickens and causes much more secretions though, so there are many days that I won't give her the lolly because I'm afraid of her hyper-secreting and aspirating. The last couple days I haven't given her the lollipop because she had her flu, tetanus and whooping cough shot on Wed. and she seemed slightly cranky -- I didn't want to mess with her. So she's in her chair watching her cartoons and crying. Just howling and crying and Nestor and I are at a loss trying to figure it out. In one motion she put her hand up, pointing to the cup of lollipops I keep next to the TV and when I asked her if she wanted "lolly" she signed "give me" immediately! We are both so blown away!!!! Amelia signing "give me" were her first words, so to speak. She's only really used them when prompted, ie. "do you want the red ball?"

To see her put "give me" into real action, proving that she understands the context of using those words and how to utilize them on her own, gives me so much hope in looking to the person she is and who she is becoming. Baby steps friends, I am truly thankful for them.

Sunny and 75 Degrees

2010-11-16T00:20:00.000-05:00

It's the strangest thing to be sitting here, in November, wearing cargo capris and a little cotton blouse. I haven't quite grasped the concept that although it may get chilly at night...it's going to be sunny and 75 degrees most days for us from now on.

Amelia is continuing to adjust really well out here. Her newest way to give Mommy and Daddy (and nurses, friends, family -- whoever happens to be standing there) a heart attack is to "rock and roll". She is probably around 45 pounds now and is learning to throw her weight around. Amelia sits in her chair for her feedings (similar to a Trip Trap Chair) or in her stander (which she is just growing out of and we desperately need to get her a new one) and throws her entire upper body from side to side! Nestor has been doing a recur on the show "90210" and asked one of the Grips if he could have a 35 pound sandbag (they use them on set to weight down lights, screens, props, etc, anything and everything really). The Grip said to Nestor "What do ya want it for? To weight down your garage door?" Apparently that must be a common request. Nestor had to politely explain our unusual circumstance and need for it. Needless to say, we now have her chair weighted with a 35 pound sandbag -- but no joke, I think we need another one!!!! It's a real discovery for Amelia to feel her body and it's movement in space. AND, she is moving it quickly! For those of you who know Amelia, she doesn't do anything quickly. Her movements are slow and somewhat floppy, so to see her bounding from side to side is exciting. We're not exactly sure how to work with it. Clearly Amelia is needing that stimulation, and I also think it's cool that she's found a way to provide it for herself -- but it's just too dangerous and scary to allow her to do with reckless abandon. I've started putting a velcro band diagonally around her like a seat belt when she's in her chair, she still does the "rock and roll" but can't get up as much momentum so the chair legs no longer leave the ground! -- as for the stander, I just put my hand on her shoulder and encourage her to stop rocking the whole thing from side to side (the stander is on it's last legs and I'm waiting for it to start splitting apart -- like Forrest Gump's leg braces in the movie). Anyone have any suggestions/ideas?

Amelia is really getting expressive in her vocalizations and facial expressions. She makes lots and lots of faces while she's playing. When I talk to her she'll scrunch her nose and mouth up in response a lot of the time. Her teacher at Lokrantz, Carolyn is one of the top teachers at her school and Amelia is doing so well in her class. Carolyn is very well versed in Augmentative Communication and Amelia has a 4 button switch at her school table that she uses each day. Also, Amelia has a health care worker who is always with her named Esther. She's really terrific with Amelia and gets her up and around the 3 hours Amelia's at school.

Nestor and I were able to steal away last weekend for a couple days, to Palm Desert for a Celebrity Gold Tournament benefiting Childhelp. It was a wonderful getaway for a wonderful charity. Childhelp is for children who have been abused and/or neglected. There were so many precious kids there and this event raised so much money to help with their facilities and programs. We were very honored to be there and be a part of it.

Here are some photos from Halloween at Amelia's school. Nestor is not a huge fan of dressing kids up unless they are part of the dressing up process. So my compromise is to put her into an outfit that is festive and exudes the "Spirit of Halloween." I thought the pants and top were hip and the skirt was actually chosen by Miss Amelia at a recent trip to Costco...so I guess she was actually a part of the dressing up process (so there!)

Charming the crowds in the Halloween Parade at school!

Seriously Mom, get the camera out of my face please!!!!!

People.com article

2010-10-15T15:41:00.000-04:00

some pics from our day at Malibu beach

A really nice article written about our family.

http://celebritybabies.people.com/2010/10/15/secretariats-nestor-serrano-on-daughters-cerebral-palsy/#more-115010

Falling Behind

2010-09-27T19:02:00.000-04:00

Daddy and Amelia lounging in the jacuzzi...ahhhhh!

I am home today going through all the paperwork that I should have gone through about 3 weeks ago. Amelia's Medi-cal Waiver booklet -- which I've filled out mostly, but have to corner Nestor into sitting down and going through the last bit of financial's with me. Her IEP (Individualized Educational Program) letter -- which to be fair, just came home today, but had to call her Service Coordinator at the Regional Ctr. and make sure I signed it correctly and that he is on board for the big meeting next month. We are coming from NY with a really strong IEP -- more therapy than anyone around here has ever seen! I want so badly to do right by my girl, but feel a bit of a pit in my stomach regarding this piece of it. Yes, I can fight, fight, fight...and I will. But you can't squeeze blood from a stone. When we set up Amelia's NY IEP in NY, the school systems were in a different place financially. Services were still abundant and budgets weren't being sliced apart with a paring knife. A year and a half later, I'm pretty sure we're going to have to dig deeper and get creative. I know this move was the best thing for all of us -- for so many reasons, I just don't want to miss the boat on this one, ya know?

I also need to get down with CCS (California Children's Services) and get them the information they need to "determine Amelia's elegibility" for services. They're an agency set up for children who are medically fragile/critical care cases!!! WTF????? Who is more qualified than Amelia? Jeez! The thing that set me off was when I got a call from a Dr. there. I have sent all of the records requested by the nursing supervisor and case mgr. Then this Dr. calls and informs me that she's not sure if Amelia qualifies for the "type" of therapy they do there. For example, she says, our PT is more geared toward children who are "hypertonic"(high tone, spastic)...Amelia is "hypotonic" (low tone, floppy). WHAT????? Isn't therapy, by nature supposed to be individualized for each person's needs? Sounds like they have some lazy, uneducated therapists there, if that's true. But here's what really ticked me off. This Dr. is calling me out of the blue...with Amelia's file on her desk. She can pretty much tell me anything she wants to get CCS off the hook. She has the advantage because she knows everything about Amelia and as much as I've read and asked professionals/teachers/parents/therapists about CCS, everyone will tell you the same thing "Yeah, CCS is weird. They have their own set of criteria and it's really hard to figure whether or not your kid is going to qualify." Again, WHAT???? This is a Government Agency! Don't they answer to anybody? I asked what happens when a parent goes after them...I was told that as far as anyone knows, that hasn't happened. Well.....California, meet NY!

The other thing I have been truly slacking is getting the family photos up. I finally got Nestor to agree to give me the back hallway so I can jam it full of our loved ones! Hasn't happened yet. Because the hallway isn't that long, and we have soooooo maaaaannnnnnyyyyy photos, I have designed my master plan of going to Aaron Brothers and buying some of those multi-frames. I'll do it. Probably just before my folks come out at the end of Oct.

Any lastly, I feel horribly guilty because I have been very lazy and negligent in sending out thank you notes to all our wonderful family and friends who thought enough of us to send us off to California with gifts and giftcards. So wonderful! I started the thank you cards, but didn't want to send half and then the other half -- in case anyone from Group B saw the note from Group A and thought "how rude!" not knowing their's was coming soon. I truly meant to write the other half -- but the days slipped to weeks and so on! This is not to get out of writing the notes...just wanted to say sorry for not being more on top of it.

This has been the most challenging, exciting, scary, confusing, exhausting....exhausting, fun experience in a very long time. And, as always, I remain...a work in progress.

My Nightmare

2010-09-22T13:37:00.000-04:00

Visit msnbc.com for breaking news, world news, and news about the economy

Potty Post!

2010-09-15T20:47:00.000-04:00

Amelia relaxing on the deck

It has finally happened..Amelia has now gone #1 on the potty -- averaging about 2x's/day since she started school on Monday. Woo hoo!!!!! Her healthcare attendant, who we really like, informed me on Amelia's first day of school that she will be putting her on the potty 2x's each day at school. So Nestor and I ran out on Monday afternoon and bought a little potty for home. She went #1 for the first time at school and the first time at home was yesterday afternoon. Both Mommy and Daddy were present and you would have thought we had just won the lottery with the hooting an hollering we did! Amelia was very proud of herself too!

It's weird too because I just had a conversation with another special mom last week about how she's been toileting her son -- who is very similar to Amelia. I was surprised because I hadn't really thought of it as a possibility for Amelia until much further down the road. My friend told me to start making a log of when (more or less) Amelia goes, throughout the day. Then try to put her on the potty when you think it might be the right time. I haven't started the official "log" but I'm trying to feel her diaper and if it's been dry for awhile, putting her on the potty.

Another thing I haven't done yet, which my friend recommended, is to get her big girl undies and put them under the diaper so she can feel when she gets wet (our kids have enough issues with sensory stuff and diapers these days wick the moisture away, so much so, that typical kids have problems feeling when they're wet) -- so I guess that's next. It just sounds like such a huge commitment and mess!

No #2's yet...but the day is young!

9 Years After

2010-09-11T18:08:00.000-04:00

I can't believe it's been 9 years since we were attacked on American soil. Nestor and I stood at the windows in our little apartment on 10th and Hudson St. and watched the unimaginable. I remember the sheer terror and panic I felt. I couldn't believe what I was seeing...there in front of me...not on TV but in front of my face!!!! I kept saying, through the black smoke, as the first tower went down "it's not there anymore. OH MY GOD IT'S FALLEN DOWN!!!" We didn't know what to do with ourselves.

We took our dogs, Blackie and Elvis out for a walk. Everyone was walking around in a haze. There were throngs of people walking up Hudson Street covered in black soot -- dazed and confused, silent, crying, weeping. They looked like the walking dead. No traffic, just Emergency Service Vehicles. Nestor was desperately trying to look for his sister, Evelyn, who worked in the American Express building adjacent to the Twin Towers. We found out later that she had come directly to our apartment, but in her confusion couldn't find our correct apartment buzzer, so she went around the corner to the PATH station and got the last PATH train back to NJ where she lives. But Evelyn didn't reach us for some time later and until then we were panicked to know what had happened to her.

We lived on 10th Street where the 6th Precinct is located. You couldn't even get onto our block without a photo ID with your address on it. For weeks, vehicles couldn't get in below 14th Street, including groceries, papers, everything. There was price gauging on milk (altho in NYC, how can you really tell), the gyms were closed, we just sat in our apartment with the TV on, day and night. It was so somber and dark where we lived. The black soot kept settling on the window sills.

Time ticked by so slowly. One day we decided to go for a walk and head east. The strangest thing happened -- the farther east we went, the livelier things became. By the time we hit Alphabet City -- life was happening. The outdoor cafes and bars were spilling over with chatter and laughter. Sounds of dishes and cutlery, cars, traffic....LIFE. We had been living in a war zone in the West Village -- literally. It felt so good to get out, have a drink, some food and actually smile again.

Those were such black days -- for the entire nation. I am grateful that I was there to see it firsthand. As horrific as it was, it was an event that I will sadly hold in my heart forever.

In the weeks after, there were hundreds of people camped out on the West Side Highway with food and water for workers in Emergency Service Vehicles. We all learned to look at Policemen and Firemen in the eye as we walked by them on the streets and give them a solid "hello" and "thank you." Seeing the out pouring of love and support to our nation's first responders -- firefighters, police, EMS and all the other people that pitched in their efforts -- they are our heroes. And of course, remembering all the people we lost 9 years ago...who will never be forgotten.

Spike Visits LA

2010-08-09T01:19:00.000-04:00

Spike, Nestor and I at Disney Studios

Spike came into town this past Monday and we had a jam packed week of fun! Tuesday night we attended the Red Carpet Premier of "The Expendables" and Wednesday night we saw a screening of "Secretariat" at Disney Studios. "The Expendables" was disappointing to us. Such a huge cast with so much potential -- but not much of a story. Just straight action, CGI, pyrotechnics and tons of corny dialogue. "Secretariat" was amazing! A real movie for the family. The performances were terrific and I must have cried 10 times! It was directed by Randall Wallace ("Braveheart") and the racetrack scenes were just so exciting!!!!

Amelia was soooooo happy to see her big brother! She would light up whenever he would come in to see her and she just can't keep her hands off of him! Amelia would laugh and dance more whenever he was around. It's so cute. She doesn't see him all the time...but she definitely knows who he is to her. Smart cookie that girl of mine!

Here they are in her room. So sweet!

We also had a BBQ on Wednesday and Spike met his cousins who live 10 minutes from us in Calabasas. We sat around and talked -- even pulled out a Ouija board at one point as they told us a story about the woman who had owned their house before them and had committed suicide in the garage. Creepy! I'm not sure if Spike had even met them before and definitely not their kids, so that was a fun (spooky) time too!

Friends came by to visit and hang out. Nestor and Spike got to have a lot of quality father-son time. Dinners and lunches were prepared and consumed. All just passing days in paradise! Saturday morning my cousin from DC came by for a quick brunch, while passing thru from LA to Santa Barbara. Yesterday, Nestor and Spike went golfing and then met Amelia and I at the Calabasas Commons. We were sitting by the pond/water fountains they have there and out of no where, a tortoise walked out into the walkway. We've been there a few times and never saw any tortoises. We concluded that they must be new there because A) they looked lost, B) other people were reacting to them as if they had never seen them before, C) there were like half a dozen lazing on rocks all of the sudden! Nestor and Spike kept picking them up as they crawled out and put them back near the water. So funny! I'm sure the tortoises were cursing us under their breath but they looked like they were going to get trampled by strollers and what not. Last night Spike and I made Toll House cookies. It's our thing. We had a 3 teaspoon raw cookie dough limit each! And today we had the weekly get together here with our LA family. So wonderful to have everyone around and pitching in here and there to get lunch on the table before Spike had to leave for the airport. Sad to say goodbye...but I'm pretty sure he'll be back!!!!!!

Settling in

2010-07-25T18:31:00.000-04:00

There is so much to say...but this is not that post. This is just a howdy do, we-haven't-fallen-off-the-planet post. We're settling in nicely and hosted our first little family dinner here lastnight. The ribs were a little tough, the boys didn't like the watermelon salad (the girls did tho!), Nestor thought the mac&cheese was gritty (from the parmesan) and the monkey bread took an extra 25 minutes because the oven got turned off...but that's ok! We had a wonderful meal and everyone -- friends and family have been as generous and helpful as anyone could be.

So far we're not missing NYC. The friends and family there...YES! But the lifestyle and teeny tiny apartment...NO! We are truly living the california lifestyle at it's finest. We LOVE our house and we have a wonderful nurse, Patricia, who is remarkable with Amelia. She has worked with lots of kids like Amelia, accompanying them to PT and OT -- therefore, she implements a lot of the techniques she's learned with Amelia each day. It's wonderful. They have "school time" where she works on OT and colors/numbers etc. techniques. We are so lucky to have found her!

I've been working with Amelia with colors too and she's really getting better at sorting her colored boxes. I'm constantly amazed by her. Today, I showed her pictures of her toys and asked her what she wanted to play with. I was pretty sure she wanted her sorting boxes, but gave her 4 photos to choose from off the velcro board. She chose her shape sorter...I was a bit surprised. When I went into the other room to get the toy, I came back to find that she had put the picture of her shape sorter back onto the velcro board and had taken off the photo of her sorting boxes!!!! I was SHOCKED!!!! She is so smart and it is so exciting to see her doing things to help herself communicate!!!!

Here are some quick pics I just took to give you a sense of this place. I'll get more inside the house as we get the pictures up and order a dining room table!!!!

Amelia enjoying her lunch!

The deck

The backyard and back of the Guest House

This is what I see when I wake up each morning

The front patio with jacuzzi

I LOVE NY

2010-06-26T17:18:00.000-04:00

It is a week of goodbyes. I wasn't prepared to feel the way I do. All of the people who have helped us navigate through this world on the day to day are staying in New York and we are leaving them.

Thank you:

To our wonderful family -- we would never have been able to make this move without all of your love and support.
To our irreplaceable extended family at UCP, NYC -- you have no idea how important and necessary you have been to us and continue to be. Thank you, thank you, thank you!
To our wonderful therapists -- Amelia has grown so much under your guidance and hard work.
The most remarkable preschool, Roosevelt Children's Center through YAI -- I cannot thank you enough for making our kids' world as "normal" as possible. Amelia's principal, coordinators, teachers, therapists, aids, and everyone else that makes that school run are exceptional! Your smiles and warmth make it a place we will always cherish!
Our amazing nurses and respite workers -- you have given me space and place to breathe.
Our doctors who do what no one else can do for our kids and have made sure that Amelia has all she needs to be as safe and healthy as she can be.
To Adaptive Design -- for teaching me how to use my own hands to build - whatever I can dream up for my daughter and so many other children, who have yet to "join in" because they just can't...YET.
To our friends -- ALL of our friends. That's a broad term, because I don't think you can have a team this incredible around you and not consider each one to be a friend.
To our Jozette -- you are so special to us, like a sister. You slid right in to our family knowing just what to say and do each step of the way. You are ambitious and intelligent. I cannot wait to see what you can do!

It's been too much this week. So overwhelming. It's a week of lasts for me. Each thing I do I say "this is probably the last time I'll be ____________" and it's too much to comprehend.

On the 16th, Amelia had her Luau prom at school. So sweet! Each classroom had a different activity in it and the classes rotated, spending 20 minutes in each room. One room had necklace making with string and paper rings. Another had Pina Colada making (virgins, of course) where each child got to help put in the mix and then use a switch to make the blender work. One class had Hula music and the kids played instruments along to the music. And another had backgrounds, props (grass skirts and coconuts) and even a Hawaiian catwalk where pictures were taken of the kids. The last one had water tables and sand tables -- you know, so the kids could go to the "beach". Then all the classes ended up in the gym for dancing! It was so cute. Amelia was absolutely pooped by then.

beautiful girl!

waiting for the bus

doing the catwalk with Luiza

playing ocean sounds on her keyboard dude!

playing at "the beach"

The Friday of that week, our unbelievable respite worker, Jozette, threw Amelia, Nestor and I a surprise party at our favorite spot, Cowgirl. We were blown away!!! She spent a month scheming this thing out. Inviting all of our service coordinators, former nurses, our other respite worker - Patricia and all of Amelia's therapists. Jozette even got us a scrumptious cake (on table) from her cousin's bakery in Brooklyn - OHHH!

Juliana (MSC), Karen (MSC), Carol(SEIT), Patricia, Amelia w/ Jozette, Nestor, Keisha (LPN), Debbie, Elana (SEIT) (from left to right) at our surprise party

And yesterday, Amelia's school, Roosevelt Children's Center gave Amelia and her nurse, Luiza a "Goodbye" party. Amelia had a really great time. Her teachers gave her a beautiful photo album filled with her friends, teachers and therapists at school. We will truly cherish it and look at it often! Also, one of the boys in Amelia's class gave her a pretty little purple dress from H&M. Thanks to him and his Mommy too!

enjoying a chocolate cupcake. what?

I came to NYC to go to college at NYU. I was 18 and thought I would conquer it! Just like every other 18 year old, right? But what I learned was that I didn't want to conquer, I wanted to be one of them. I love this city! The energy, the beauty, the history, the life -- I love it all! I never thought I would ever leave it. But 21 years later, I am sitting in my living room, staring out the window with walls of boxes to the ceiling all around me. I am leaving the day after tomorrow.

What I am trying to remind myself is (it's hard when you're living in an episode of "Hoarders") that as many "lasts" as we are experiencing -- there is going to be a whole new world of "firsts" when we get to our new house. A HOUSE! That sounds pretty wonderful to a girl who has been living in a 600 square foot apartment (with two other people -- along with countless nurses, therapists and others).

Even if it was in the greatest city in the world.

Finished!!!!

2010-06-08T17:54:00.000-04:00

Here's the finished product...along with a pic of the little girl who will be using it!!! Awwww.

Mommy in action:

The castle on a sunny day, with a golden path, front view:

The frog prince, side view:

The princess in her rose garden, side view:

Where she stands:

A view from above:

Amelia, the little girl/love of my life:

Stander Update

2010-06-02T21:04:00.000-04:00

I've been working furiously to complete the stander that Nestor and I made for Amelia at Adaptive Design. Loving the painting fun part! Here's what I have so far.

The front with a not-yet-painted castle:

And these are the two sides. I'm also working on a rose garden around the bottom. I'll post the finished product including the little girl who will be using it in the next few days!

It's been remarkable spending time over at Adaptive Design. Their mission is to provide equipment for every child that needs it. If you can dream it, they will build it. I am overwhelmed by their talent and commitment to the community. I am hoping to create an Adaptive Design community in our new hometown of LA. To bring the simplicity and efforts that have started here to another place will be an adventure indeed!

Due to our economy, they are having a really hard time keeping their doors open. Please, if you're looking for a worthwhile place to donate any amount of money, Adaptive Design is above and beyond anything I've seen before. They are building eco-friendly, kid friendly adaptive equipment out of basically "found" materials. They use Fresh Direct and Whole Foods boxes, Trader Joe's brown paper bags for sealing the edges of the cardboard. Their tools of choice are jig saws, steak knives, elmer's glue, dowels and sand paper. Can it be any more simple??????? This is good for our kids, our wallets and our planet. You can't imagine how strong and durable their pieces are. And they're not trying to "give you a fish" but are so happy to teach you "how to fish". They are offering classes as a model to what you can do yourself. They're happy to make the equipment for you and get paid -- don't get me wrong (and their prices are a fraction of what most adaptive equipment costs) but they would rather see their model expand globally.

Adaptive Design's fundraising includes "Perch for a Purpose" and "Caring Chairs." Click on the link above to learn more about them.

The Big Move

2010-05-18T22:35:00.000-04:00

My Mom and I changing Amelia's major diaper, on Mother's Day, out the back of our SUV in the parking lot of a diner in Phillie. Nestor snapped this without our knowledge...obviously! Hilarious!!!

We're really doing it! We're moving to LA. All the gears are in motion and it's happening. We are in escrow (and love) with a home in Woodland Hills. It's charming and we couldn't be happier. It has a woodsy feel to it which we are very drawn to. I think we'll be very happy there and I know Amelia will love it. She's going to have her very own room. I've been going crazy looking at furniture, paint and accessories (I want to get her one of those little chandeliers from Target and a cozy chair we can snuggle up on and read books...or have a lazy breathing treatment in the middle of the night)...so fun! I think we're going with a very pale pinky peach color and a shabby chic kinda thing. Of course the bed is the main focus. Amelia's been in a crib and now she's going to transition into a big girl bed. Of course, that's been a bittersweet point for me because it's going to be an adaptive bed. Our friends have a sleep safe bed which they love. We went there to visit them and I was happily surprised to see how nice it looked in real life, as opposed to online. However, at the end of the day, I WANT A PRINCESS BED FOR AMELIA!!!!! So we're just going to have to adapt Amelia's adaptive bed into a princess bed. That's all there is to it!

I'm still sorta in a calm denial that our life is about to change dramatically. We sit on the phone and talk to people out in LA -- making plans, getting referrals, planning for "when we get there" without the reality that this is ACTUALLY HAPPENING. I think when we actually start to roll up our sleeves and get down to the business of throwing out, donating and packing up, it'll hit us!

One of the many major changes for me will be making real grocery lists. I make them now. Puny ones. Ones that are sufficient for a day -- but in the 'burbs, there's no "daily" lists. In NYC, if I run out of milk or forget eggs or decide I want to make cookies...I have hundreds of places (well, maybe not hundreds) less than 20 feet from my front door to go get whatever my heart desires at whatever time of the day or night I desire it. That little party is over. I better start practicing the fine art of figuring out what I need before I leave to go to the store and not just trying to remember what I need when I get there.

Also, when Amelia comes home from school on a beautiful day, I throw her in the stroller and we hit the streets. We go to the park and swing, or the grocery store, or to see puppies in the window, or mommy gets frozen yogurt, etc. Can't do that in LA. I'll have to pack up, get into a car with her, drive someplace and I can tell you now that the energy in a mall or state park is quite different than the energy in the west village.

All that to say, we are ready! Ready for a real house, with real closets and bedrooms. A place to invite family and friends over to hang out. SPACE!!!!! Also, a real backyard with a BBQ, ooh -- and an extra bathroom! Oh, it will be so nice!

The details have been crazy. Firstly, we have to make sure the whole house thing even happens -- from personal experience I can say that as sure as you may be about something, there's always that slim chance that something unforeseen happens. Secondly, we have to sublet our place in NYC, which is well underway and looking good! Also, we have a POD from our house upstate that we packed up last summer that we need to ship out west and now we have to pack up the NYC apt and get that stuff out there. Then there's shipping cars and Nestor's motorcycle. Plane tickets...traveling with Amelia on a plane...transporting medical equipment and supplies. Then, there's setting up all the new services for her through the North LA Regional Center, CCS (California Children's Services), Medi-Cal, all new Drs. and nurses. New Team Amelia!

So the plan is for Amelia to finish school here in NYC at her incredible preschool, Roosevelt Children's Center and then hop a plane out at the end of June and get her into school to start summer session at her new preschool, Sven Lokrantz, by July 7th.

California here we come!

Among the Giants

2010-05-10T23:18:00.000-04:00

Inspiring!

Among The Giants from Adaptive Design on Vimeo.

A Chat at the Park

2010-05-05T21:37:00.001-04:00

Today Amelia, Nestor and I went to Bleecker Park as we usually do on beautiful days, after therapy and before her respitory treatment and dinner feeding. We do the swings...as only we know how and then most times we'll go sit by the sandbox to watch the rascally kids at play. Amelia loooooves this! She laughs and plays with her stroller toys. Jolly good fun.

Today we had a visitor. Probably about Amelia's age, possibly a little older (like 5):

Boy: "Does she talk?"
Me: "No. Not yet."
Boy: "Why doesn't she talk?"
Me: "Well.....her muscles that help her speak aren't strong enough yet for her to talk."
Boy: he watches Amelia for a moment thoughtfully, then with a proud nod says "You should give her broccoli."
Me & Nestor: "Wow! That is such a good idea! We'll have to try that"
Boy: now beaming with pride "Yeah. I have a baby sister and she doesn't talk yet either."

At that point we were interrupted by one of the boy's playmates and he was dragged off. The three of us watched him take off and Nestor and I chuckled to ourselves.

Broccoli.

Building a Better Stander

2010-04-26T17:47:00.001-04:00

Today Nestor and I went to Adaptive Design and spent the morning and early afternoon building a stander for Amelia. Normally, Adaptive Design won't build standers for children over 24" tall, but because we're the ones building it, they were open to us bringing in our own design and giving it a go -- knowing that we are responsible for any liability. So Nestor and I came up with a design and today we built it! We're 95% done. We just need to go in tomorrow and tweak the construction, add castors and paint it up cute for our girl! Very exciting!!!!!

And what a great experience. The crew over there is as accommodating, knowledgeable, creative and capable as can be. A huge thanks to the whole team there. Nestor and I had such a good time and learned so much in such a short visit. I joked at one point that this was more fun than taking salsa lessons. Here we were, working together, communicating, trading off tasks and constructing something for our little girl! So great. Who knew watching Nestor handle a jigsaw could make my toes curl?????

Check us out on the Adaptive Design Blog today. And thanks to Lille for the pics of us in action!

C-A-L-I-F-O-R-N-I-A

2010-04-21T16:01:00.000-04:00

It's been a crazy few weeks. It started with a marathon trip to California. Los Angeles to be exact. Nestor and I flew out there a couple weekends ago to look at homes. Beyond the normal stressers of realizing that we are actually going to make this ginormous move, it was my first time leaving Amelia.

The Friday morning of our departure, I put her on the bus as usual. Our flight was at 12pm. I felt like a heel. There I was going about our normal morning routine -- only to not be there in the afternoon when she gets home. Guilt. Anyway, we had lined up Amelia's favorite nurse, Lia and respite worker, Jozette, to get her thru the couple days we would be gone. Bubbie and Zadie were on call, as was Aunt Carrie and Uncle Scott. Amelia did great. As did the team...and I, well after a couple drinks in the first class lounge before takeoff, I was did fine too!

So we landed, rented a car and headed off to see the school, Sven Lokrantz, we want to send Amelia to in the Valley. We flew like the wind on the 405 at a breezy 4mph until we were able to reach the 101 which would take us over the hill into the Valley. I called to say we were nearby, but by then it was of 5pm and the Vice Principal was leaving for the weekend. I was really disappointed, because although Nestor had seen the school when he was in LA for pilot season, this was probably going to be my only chance until we move there. Then my phone rang and it was the Principal, Sherri, who said she would wait for us to arrive. YAY! We got there and got the red carpet tour of the school. It's a nice facility that has lots of space, adaptive equipment, a swimming pool for Aquatherapy and houses a CCS (California Children's Services) on campus -- which is where Amelia will receive some of her after school therapies. The few teachers and therapists who were still around could not say enough good things about the school. I guess the best testament for a school is the folks who work there. One Speech Therapist said she had been in LAUSD for 28 years, at Lokrantz for the past 8 and that they would have to drag her lifeless body out of there to get her to leave it. Wow! If that's not positive review for the school, I'm not sure what is.

From there we drove into West Hollywood for dinner and had a couple friends meet us at the restaurant, after dinner for a glass of wine. Exhausted, we went to our hotel in Woodland Hills to rest up for our marathon house hunting Saturday.

We woke up early (still on NY time) and went to IHOP (my fave!) for breakfast. After that Nestor drove me around the Valley -- Sherman Oaks, Tarzana, etc. to look at some neighborhoods, before meeting up with our real estate broker, Mario. We saw 15 houses that day and fell in love with a couple. One was in the hills of Woodland Hills and was exquisite! The problem is that we would have to park in a carport under the house and climb about 15 steep steps to get the entry of the house. Not great when you have a non-ambulatory child. So with much regret, we bid adieu to one of the most incredible homes I've ever dreamed of living in. Another home that we saw was the perfect home for us. One level, wall-to-wall carpeting, spacious, beautiful, big backyard and completely upgraded. Problem: it's in Northridge (far away from the action) and off of a main, highly trafficked blvd. -- which is not the nicest part of town. Ah well. And there were others, but nothing felt completely right. It was unrealistic to think we might actually find a house in a day! The great thing is that Mario got a really good sense of what we like and will be able to scope things for us more effectively. We went back to the hotel somewhat downtrodden and had dinner and drinks in the hotel lounge until we finally decided to turn in. The next morning, Nestor left at 6am and flew out to Kentucky to shoot a new scene for the film "Secretariat" and I was picked up from the hotel around 10am to fly home to NYC.

From there we decided that the best thing we can do for ourselves is to pack up and move out to LA. We have booked our reservation at The Oakwood (corporate housing) and will be heading over there the end of June, when Amelia finishes school. She will attend summer session at Sven Lokrantz (she is in a 12 month program). So that's that. The amount of things that have to be done is mindboggling. I get up each day and coordinate which calls have to be made today....tomorrow...doctor's appointment's before we leave...all her specialists...medical supply company...medical....ccs....ordering adaptive equipment before we leave or when we get out there....so much to do.

So anyway, back home....last weekend Amelia went to Hippotherapy on Saturday and then late afternoon Amelia's teacher, Melissa, from the Early Intervention days, was in town from Washington, D.C. for a couple of days and was able to steal away an hour to visit us. It was great to see her. She was exactly the same! On Sunday we got an early start to visit Nestor's mom at the nursing home in NJ and then had a wonderful dinner at Evelyn and Carlo's (Nestor's sister and brother-in-law) house with his niece, Karena. Don't know if I've mentioned it, but Karena and Jonathon got engaged and Amelia and I are in the wedding party! Very exciting! Amelia will be one of 2 flower girls. All of us in lilac/gray. The wedding is next spring, so I guess I'll have to wait until we're closer to see what will fit her...and me! Unfortunately, it feels like we're both growing;)

This Friday Amelia is having her first Bronchoscopy. Because she was so sick this winter and was on two long rounds of antibiotics, her Pulmonologist, Dr. Marcus wants to do it. They put her under, twilight, then put a camera down her nose into her lungs. Take a tissue and fluid sample and suction out her lungs. This will tell us if there is anything growing in her lungs, any colonies, that need to be treated so she can have a "clean slate." I was told that afterwards, there is a tendency to get a fever, so we'll have to see if she'll be up to doing Hippotherapy on Saturday.

Nestor and I will be taking a class at Adaptive Design next week and we're really excited to build some adaptive furniture for Amelia. We'd like to build her a new stander (it's a piece of equipment that we put her into so she can bear weight into her legs) but we were told that they don't build standers for children over 24 inches tall due to liability. However, we were encouraged to try and come up with a design that might work...as that is how all their furniture has been created in the past. So we did!!!! I called Adaptive Design and ran the idea for it past one of the builders, Antoinette. Nestor and I will present it to them when we get into the workshop on Monday morning! If we can't build that than we'll build her something else. I am hoping to get Adaptive Design out to LA. Their furniture is so brilliant and everyone should be able to access it for their special kids -- it just makes good sense. So much money is poured into adaptive equipment for our kids and here is a company doing it for so much less, in kid friendly colors and designs, they're "green" (it's all made out of cardboard!) and I can tell you as a parent -- the table and chair we got for Amelia has helped her tremendously in her therapies! I'd love to help them make a move like that and support their organization to take the leap! I mentioned Adaptive Design to Sherri, the Principal, at Sven Lokrantz, showed her pictures of Amelia using the furniture and she was blown away by their products. Sherri wanted to know why she had never seen anything like that or heard of them. I was told by someone at Adaptive Design that the biggest thing it takes for a not-for-profit like theirs to succeed, it's having a community based support. I think we can do that!!!!

FYI: For those of you in or out of NY and are interested in Adaptive Design classes, please call them. They have one or two day classes and master classes. You can go in and they'll teach you how to build your own furniture for your child or students. Such wonderful people there with their hearts in the right place. I encourage you to check out their website.

Sunshine On My Shoulder Makes Me Happy

2010-03-22T15:12:00.002-04:00

What a glorious weekend we had here in NYC! Tons of sunshine and warm weather. Amelia was off of school on Friday too, so we had a loooong weekend -- just us girls!

Well...I was able to sneak away on Friday evening to have some drinks with my friend, Joey. Had a fun time at our usual haunts in the West Village. Besides the great drink deals in gay bars (2 for 1 until 9pm) I also love them because...and this is key...no man in the joint is looking at ME! They don't care. As a matter of fact, they'll tell you if your shoes are fierce...if not, they just go along their merry way (no pun intended). I did the meat market thing in my 20's into my early 30's. I'm not selling anything anymore. So it's really nice to go out with an old friend and just be able to talk and not worry about the scene.

Saturday I woke up with a bit of a headache (no surprise) so Amelia and I hit the street, after Mommy had a couple cups of coffee and bagel. We went to Bleecker Park (swings, slide & walking on the jungle gym), then to the Farmer's Market across the street, then up to Union Square, down University (I showed Amelia my dorm from NYU "Mommy's first home in New York!") around Washington Square Park (which is closed again for renovations) and back home via Bleecker Street. And that was just before lunch! After our afternoon nap (and I did say "our") we made our way over to the Hudson River Park. It was magnificent! We went to the kids park and walked all over the place and then watched the sunset.

On Sunday Amelia's BFF, Darmia, had her Birthday party at the Scholastic Bldg in Soho. Jozette (our Superhero In-home Respite Worker) joined us. It was so fun! Amelia had such a good time and our gracious hosts, Auntie Donna and Uncle Shawn were wonderful!!!! They had circle story time, limbo, freeze dancing with instruments, we made peace sign pillows and blinged up some little cardboard jewelry boxes. A little girl we met there, Emma made Amelia a jewelry box. I also took home some jewels and a box to do another one for her.

Somehow when I sat down to do the box today...I ended up with THIS:

That's right, Amelia is the first contestant on "Pimp My Adaptive Chair". How'd I do? Never leave me alone with crafty things and a hot glue gun!!!!! I couldn't resist. Nestor's gonna laugh me outta the house when he comes home from Miami tomorrow and sees this.

I have blaringly opted out of writing a lot about the BIGGEST Healthcare Reform Bill of my lifetime -- and one that Amelia will benefit from GREATLY. I am excited about what this means for all of us ...especially for my little girl who is medically fragile and has blown thru over half of her lifetime cap in the four short years she's been on this planet -- due to hospital stays, surgeries, medical equipment and nursing care -- just to name a few. Some are hyperventilating while others of us are breathing a great sigh of relief. I feel like it's so fresh and fragile -- I feel like we need to digest it for a little while.

Whatever your views, this is the greatest country in the world and I am embracing this change with wide open arms.

Ready for Spring

2010-03-12T16:33:00.000-05:00

2/18/10

The view from the bathroom window at my parents' house in MD

My great-uncle, Sid passed last week. My mother's uncle thru marriage. He owned a somewhat infamous restaurant in Baltimore back in the 50's that was famous for their "4x4's" which was a delicious (I'm told) 4x4 hamburger, served in a basket with the most mouthwatering french fries and onion rings (I'm sure my father isn't romanticizing them;). He adored his wife, my aunt Barbara, for ages. When she passed several years ago, he kept on. Enjoying his children, grandchildren and great-grandchildren. He was very blessed, very loved and passed away with all of them by his side.

Earlier today, Nestor and I made our way up to Lincoln Hospital to visit Nestor's aunt/godmother, Titi Luz. She was on a respirator, being fed thru a tube and unconcious. Her body was swollen and cool to the touch. The doctor came to speak to us and told us that the prognosis isn't good, she's having organ failure and they don't expect Titi Luz to make it out of there. We held her hand for awhile, said our goodbyes and came home to get Amelia off the school bus. Nestor's sister, Evelyn just called to tell us that Titi Luz has passed. There is sadness and relief in this for us. She was Nestor's father's sister -- the last surviving of the siblings. Amelia is named for her mother and I think she always felt an extra affinity towards her because of that. Titi Luz was married to uncle Angelo, who passed several years ago, for decades. They never had any children together, but she had a stepson from uncle Angelo.

I feel very fortunate to have gotten to spend time with this warm, loving, generous, strong woman who was a force to be reckoned with! She was about 6 feet tall, legally blind and LOVED to talk!!! Wow, did she love to talk!!!!!! Spanish. English. Whatever! She lived in the Bronx and couldn't be moved. Refused! She lived alone and had attendants who came by daily to help her. A couple months ago, just after the holidays, we made the trek up to Titi Luz's apartment. On a rainy Sunday, Nestor, Evelyn, Carlo (Evelyn's husband), Amelia and myself all went up there. Evelyn and Carlo brought the divine food (as always!!!) and we brought the sugar (that would be Amelia) for a visit. We sat around for a few hours and gabbed the afternoon away. Titi Luz loved listening to Amelia laugh while she watched her cartoons.

As we bid adieu to winter this weekend (don't forget to spring forward sunday -- this announcement brought to you by my inner "father" voice) Amelia continues into her 5th week of antibiotics, per her Pulminologist. She was worse, then better, worse and now getting better again. They don't want to pull her off until she stops coughing up the green goo. I agree. No fevers tho, so that's a great thing!

Amelia has been very verbal lately and will make sound at anyone who dares to hold a conversation in or around where she is sitting -- particularly if it's me getting on the phone. I refuse to succumb to her dictatorship...she tells me when to wake up, what cartoon is acceptable and now this???? Uh-uh...no Ma'am.

Obviously, as I mentioned above that Nestor and I went to visit his aunt, Nestor is home from LA. After a month away -- he finally came home on Wednesday. He always comes home eventually. Only to get a call last night (Thursday) that he is flying out on Sunday, for a week and a half to Miami. Oh well. Tonight we're having a date night, tomorrow to see his mom and family in NJ and then off he goes!!!! Ah well, that's show biz.

One Grandmother's Devotion Led to New School for Kids With Disabilities - ABC News

2010-03-02T13:12:00.000-05:00

Grab a hankie. This woman is truly inspiring -- and knows the true meaning of "it takes a village!"

One Grandmother's Devotion Led to New School for Kids With Disabilities - ABC News

Adaptive Designs!!!

2010-02-23T18:22:00.005-05:00

Da-da-dah! Introducing Amelia's newest and greatest play space! Thanks to everyone who contributed towards purchasing the chair and table from Adaptive Designs. They created sturdy, easy, functional and beautiful furniture for Amelia that actually looks like a child should be using it (for those who know what adaptive equipment looks like understands what I'm saying here!).

This is an action shot of Amelia's doll, Anna as Amelia sits in the chair -- tolerating my little photo shoot! Notice her feet are on a platform. It is stacked with four levels of foot platforms. They can be removed as she grows. Also, the seat has a removable piece that puts Amelia at a 10% decline when she sits in it. This is to engage her trunk muscles. It's "active" sitting.

Here she is sitting at the table. You can see how nice and supported Amelia looks sitting at her big table! She loves playing with her toys there and has become a champion star stacker!!!! The great thing is that we/her therapists/another friend can pull up a chair to the other side and play with her.
Amelia is so proud of herself! What a big girl!!!!! This has become a really important place for her to play because she is safe and supported which enables her to focus. I can't believe this wonderful furniture is made of multiple layers of cardboard. You can't imagine how strong and incredibly lightweight it is! The link to their site is on the lower side of Amelia's blog -- definitely worth checking out!!! Not only are their products incredible, but they offer classes on how to learn to craft your own projects AND they are some of the nicest people you will ever meet!

With Nestor still away, Amelia and I journeyed to Baltimore last week while her school was on break. We spent a lot of quality time with family and friends there. Jackie, my sister and I were able to steal away for a couple of hours while Bubbie and Zadie babysat. We went to the mall and had a ball at Nordstroms and Forever 21 (I am now laughing at the incident where I asked the salesperson if their "sizes run small?" and she told me "yeah, our clothes are for teens, so you should try another store further down the mall" -- ha, ha, hah, silly girl!)

I reconnected with my 7th grade BFF, Jill. What fun! I met her two spunky angels, Sophie and Oliver. They were adorable and Amelia loved meeting them. She especially loved the pictures they brought for her and the beautiful jewelry box Jill made.

Amelia also loved spending time with her cousins, Maya and Ezra. They were so sweet with her and tried to help out when she played -- doing lots of hand over hand with her. I was so happy that they were spending so much time and paying so much attention to Amelia. Below is an unchoreographed moment I caught of the two girls playing seperately while they leaned against each other. I love it!

Restoring The Power To Walk | Parade.com

2010-02-21T09:25:00.000-05:00

This is a really important step for so many people. The article touches on CP and Multiple Sclerosis towards the end. Thanks for saving this for me to see, Mom!

Restoring The Power To Walk | Parade.com

Shoes

2010-02-05T19:45:00.011-05:00

Amelia having breakfast

Amelia is growing so quickly -- I can't keep up. For one thing, like most women, she has a very extensive wardrobe. Tons of hand-me-downs, plus Bubbie and Zadie take the kids on a back-to-school shopping spree each year before school starts AND we just got out of a very heavy holiday and birthday season. This means that every nook and cranny of our little apt is crammed (very creatively, I might add) with all her little outfits, shoes and accessories. Recently her feet had a growth spurt and I had to run out yesterday to buy her new shoes. It's not as critical with a non-ambulatory child to get them the most expensive, well made and supportive shoes -- when she walks it's in her braces -- so we just go for cute. Works for us!

NEW SHOES!

This has been a curious week of ups and downs. Amelia, Nestor and I have been fighting colds since last weekend. No fevers for Amelia, just lots of secretions. It's been rough because I've been up with her nights -- and I'm trying to fight off my own thing (no rest for Mommies!) -- but really great because she's getting thru this without antibiotics (very uncommon) just lots of respiratory therapy to clear her out.

Nestor and I had romantic dinner on Tuesday nite (thanks Jozette! -for the giftcard) and on Wednesday I drove him to the airport to go to LA for a month or so. Usually these drop offs are very hard for me, but not this time. We have had such a great couple of weeks together, alone and as a family, it made his leaving easier. Strange -- but I really felt ok when he got out of the car. Usually I drop him off and as I pull away from the curb I start bawling like a baby. This lasts until I get lost on the ramps getting out of the airport and then thru my haze of tears and swollen eyes I have to figure out where the hell I am and how the hell I'm going to back on the highway or parkway -- or whatever the heck they call the damn thing that gets me back to the city. By then I'm just annoyed and forget all about why I had driven all the way out to the airport in the first place!!!

So Amelia and I got thru the week unscathed. Still fighting off our colds. By yesterday I would say we're both over the hump and sleeping thru the night nicely. Ahhh. Yesterday my friend Sarah came into the city to visit us for the day. It was really nice spending quality time with her. She's one of those friends who's been in my life for so long -- thru different apartments, dogs, boyfriends, husbands, etc.... Someone you know will be with you till the end, ya know? Anyway, we journeyed to Chelsea Market and Amelia and I settled in to watch this really amazing String Trio playing live in front of Amy's Bread, while Sarah went to get a coffee. Amelia was really digging it! I wanted to give the band a dollar but only had a $20. I asked a jolly 60-ish man behind me, who was there with his family, if it would be rude to take change out of the musician's tips, at which point, he reached into his wallet and gave me a dollar to give them. I laughed and refused, but he pushed it into my hand and said he and his twenty-something (son? nephew?) had already tipped them. I felt so odd. Like I was standing with "Every Uncle". I really loved this happy man and his sweet family in those moments. When Sarah returned with her coffee she offered this man back his dollar -- to which he laughed a jolly laugh -- and told us to please keep it -- or give it to the band. Yes Virginia, there is a Santa Clause...he hangs out at Chelsea Market in the off season!

Today Amelia and I are doing the Mother/Daughter hang for Superbowl Sunday. Amelia isn't really into either team, so we'll probably just find some chick flick to watch.

Happy Birthday Sunshine!

2010-01-20T20:39:00.006-05:00

It's been such a busy couple weeks. Running from doctors appointments, to UCP for new AFO's (Ankle Foot Orthotics) & to look at new adaptive equipment which we are very excited about, to visiting Adaptive Designs (see link on side bar list), which is one of the most incredible places we've ever visited! Amelia got sick last week and is on 2 weeks of antibiotics, eye drops, ear drops -- along with all the usual meds and respiratory routines. Plus, she shared with Mommy, so I got pink eye too and some kind of sinus thing. We're much better now.

So, Adaptive Designs is a place in NYC that builds furniture out of heavy duty, dense, corrugated cardboard. They bind together layers of it so it feels as strong as wood -- it's incredible. And because it's cardboard they can build ANYTHING! If you can dream it, they can build it. We ordered a high sitting chair with a 10% decline insert that forces the person sitting in it to engage their core muscles -- I think I need one. Also, they're building her a table with an attachable board that can be positioned from flat to 90 degrees and is covered with velcro so we can attach toys to it. We're so excited! We were also able to borrow a scooter from them (if you go to the website, go to Hannah's story -- it's the big wheel scooter that she outgrew in the pics). And my favorite part about their furniture is that it is all painted up beautifully. So much of the equipment, that our children need, is institutional looking -- everything there is a work of art, all hand designed, built and painted. They also work on the "no child left behind" policy which means -- your child needs it -- we're gonna build it -- and we'll figure out how we're getting paid later. The people there are truly, all heart!

We saw Avatar a couple weeks ago (if you haven't seen it, you must -- in 3-D, we want to go back to see the 3-D IMAX version -- which was sold out). Nestor and I were struck by one of the lines, "I see you." I love this line. It's how I feel about Amelia. She can't speak, eat or walk -- but I see her. I see this little soul and I know this little person. She is goodness, innocence and love. But she is also opinionated, sassy and demanding. Amelia can't tell you exactly what she wants, but boy will she let you know -- her way! She has perfected her laughing, happy sounds, head shakes, signing "give me", wailing and a little crying (Amelia is quite the diva-drama queen). She makes her voice heard.

Amelia's birthday is on Sunday. I can't believe how much my life was changed *forever* four years ago. I cherish every moment with her.

Happy New Year!!!

2010-01-06T11:37:00.005-05:00

Chelsea Market
Christmas 2009

OK, let's cut to the chase. Between Christmas and New Years, Amelia had her Nucleur Test. This is where they put radioactive dye thru her G-tube and do several studies to see how her system is digesting and if there is any reflux and/or aspiration happening. She was such a good girl! No one could believe how sweet and cooperative she was. Amelia is not at a point where you can tell her to sit still and she understands. She is 3 (almost 4!), with global developmental delays! But boy, o boy -- she was put on the gurney and fell asleep -- for all three studies! What an angel.

AND THE RESULTS OF THE STUDY ARE (drumroll please)...Amelia is NOT refluxing or aspirating. This is very good news and gives us a clear understanding as to what is going on.

This means that all of her recent pnuemonias are a result of her not handling her secretions well. They sit in her throat and chest and because of her hypotonia (low tone), they pool, grow bacteria (dark and moist conditions) and eventually make their way into her lungs where the infection blossoms and off we go to the emergency room in the middle of the night!

However, let it be said that since our last hospitalization in November, Amelia has not had a pnuemonia. She got a cold a couple weeks ago -- and that is ALL it was. A cold. This has never happened in this household. A runny nose has always led to a full blown respiratory fallout -- with major courses of antibiotics, steroids and a slew of breathing treatments.

I attribute all of this wellness to our new Pulmonologist, Dr. Marcus at Maimonides -- who we were led to thru our wonderful friends Carrie & Scott (shout out!!!). From our first visit he was so proactive in Amelia's respiratory treatment and this is exactly what she needed. We had a routine visit with him on Monday and I swear, it's like Amelia understands how much this man has helped her because everytime he walked in the exam room she smiled and laughed at him. That's not typical behavior with a semi-stranger for her. It's great! We are so lucky to have found him.

Yesterday, Tuesday, we went up to UCP to have Amelia fitted for new braces (AFO's). She is growing like a weed! We're about to order our first adaptive stroller, the Special Tomato EIO Pushchair -- anyone out there have it? It's really nice and I think she'll be much more comfortable in it. The Physiatrist, Dr. E and PT, Michelle, can't believe how big she is. The group there has known Amelia since she was about 6 months old, so it's great to get their perspective and input as to how she is developing. Dr. E was saying "Boy, she's moving a lot. One day she's going to be running around and..." I just glow when I hear someone who has worked with so many kids like mine say that. Dr. E has seen a thousand Amelia's -- and I get giddy when I hear her talk about what she sees for Amelia's future. I see it too!

I try to do a lot of walking with Amelia. She's gotten so strong. I stand behind her, hold her hands and she'll take steps and walk. It's HUGE! I used to have to hold her by the hips or under the armpits, but now she'll walk just holding your hands. Of course each step is a struggle, but she is so determined and I am so excited each time I see her achieve a voyage from her crib to the living room or to her stroller. I still can't believe all she can do!!!!

Also, we've discovered that Amelia is huge grape fan. In the car ride down to Baltimore last week, Nestor and I were snacking on grapes and I felt bad -- because whenever I'm ever eating anything Amelia gives me the stare -- the one that says "Give that to me!" Well, I put one between her teeth and had her bite down on it, then rubbed it all over her tongue and gums -- she loved it. She kept reaching for more and more grapes and I would repeat this ritual each time. Her Speech Therapist came for a session for the first time since the break and I told her about Amelia's new love. She tried it with her and said that she got the best jaw movement she's ever gotten with the grapes! Now that's how you start the year off right!

Snow Day

2009-12-19T22:10:00.003-05:00

Yes! We are in the midst of a "White Out!" It's snowing friends. We are hunkering down for a laaaaazy Sunday! Can't wait!

Amelia's been having a good week, although she seems to have some kind of runny nose and sneezing thing. There's been lots of wiping and suctioning, but no fevers or up-all-night. It seems like the respiratory regimin we've been doing 2x's daily is keeping her on the healthy side. Amelia also got the second half of her H1N1 vaccination this week. Such a brave girl! She didn't make a peep when she got the needle.

Lots of good gifts for Chanukah this week too. What a scam! This girl gets both Christmas and Chanukah gifts! Who's better than her? Such fun. AND...we haven't even gotten down to Baltimore yet to see my family! Lot's of presents waiting there too.

Last night Nestor and I had a date. While Amelia hung home with Jozette, we hit The Angelica and saw "Crazy Heart". We really enjoyed it! It's the first movie we've seen in a really long time -- and this morning we went, at 7:30am to The Ziegfield Theater to see Disney's "The Princess and the Frog". Nestor is a Friar and each year the Friar's Club does a movie event for kids with special needs and kids from the inner city. It's flawlessly supervised and executed. The woman of the day, Allison Grambs, who is the planner, contacts us each year and sends tickets for us and any extras we request. She ropes off seats for us and it's so much fun! Last year we had our friends, the Leshin's join us (who have a little boy with CP too), along with Amelia's nurse, Lia with her son and we got a bunch of tickets for families at The Ronald McDonald House. We had no idea how Amelia would do last year and surprisingly, she loved it! I would say she did even better this year!!!! The Leshin's didn't make it (hope Sam and Judah are feeling better!) this year, but Lia made it with her son and also, Jozette, Amelia's respite worker, with her family. Then we scurried home and hunkered down for the rest of the afternoon. What a great day!

Next week is a short school week. We're taking Amelia to UCP on Tuesday to get her fitted for new AFO's (leg braces) and to look at some adaptive strollers. Uch! I've put this off for so long because I've been in denial that she would actually need a wheelchair. Well, this is the first step toward that -- hey, it is what it is...

We're spending Christmas with Nestor's family and staying around town because Amelia is having a Nucleur Test on Monday and Tuesday between Christmas and New Years. They will inject dye thru her g-tube and do some studies on her gastric emptying. We'll go home and come back the following day to get studies done on her chest to see if any of the material was aspirated into her lungs. We're doing all of this to see if Amelia's fundoplication has come undone. We'll know more after.

On Wednesday we're heading down to Baltimore to see my family. We'll spend New Year's there and head back to NYC on Saturday.

I'm really looking forward to having a nice long break to visit all our friends and family -- it finally feels like the holiday season and I'm loving it! Happy Holidays All!!!! Peace, love and above all, Happiness to all of you.

Heaven’s Very Special Child

2009-12-16T23:18:00.001-05:00

By Edna Massimilla

A meeting was held quite far from earth.
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“Her progress may be very slow,
“Accomplishments she may not show.
“And she’ll require extra care
“From the folks she meets down there.
“She may not run or laugh or play,
“Her thoughts may seem quite far away.
“So many times she will be labeled
‘different,’ ‘helpless’ and ‘disabled.’
“So, let’s be careful where she’s sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they’ll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven’s very special child.”

The Holiday Rush

2009-12-10T12:39:00.005-05:00

The holidays are right around the corner and Nestor and I have been running around gathering supplies. Every year there is the regular gift list...but the last four years it's grown exponentially. We have lots of therapists, local pharmacies, nurses, Jozette (our respite worker) and Amelia's whole school crew...along with all the usual suspects. So what to do?

I've always enjoyed being crafty/baking so I've taken to making things for everyone each year. Last year it was gourmet caramel apples with Belgium chocolate, crushed nuts and oreos -- they went over really well! This year I'm mixing it up and doing cookies in a jar (you know, where you layer the ingredients) and my (slightly famous) white chocolate popcorn. I got the initial popcorn recipe from my Aunt Andi (thanks!) several years ago and have added and subtracted stuff to it over the years. It's great to give to a larger place, like our pharmacies, Amelia's school, etc.

What do you do for the people who help your world go round?

Cake, Bibs and Pups

2009-12-03T15:38:00.003-05:00

Amelia smells like cake! She came home from school today with cake batter all over her clothes. Amelia doesn't eat so for me this is a huge treat. Anytime she has food stains on her clothes -- I jump for joy. Today at school they had "cooking" -- so cute! For those of you who enjoy the sweet smells your child has after they eat candy, cookies or pudding -- breathe it in, cherish it, then go spray the clothes with OXY! (that stuff gets out everything!)

I can't believe it's already been a week since Thanksgiving. Time is a flying! We went to my niece, Karena's in Jersey City. It was scrumptious, delicious and decadent! Amelia could not keep her hands off her big brother, Spike (21). She kept grabbing his shirt, hoodie, whatever she could reach from her stroller while he sat at the table trying to eat! We left her house and headed straight to Baltimore to see my family. We were there until Monday. It was a terrific trip which included being with my sister and father on their birthdays, seeing family, my 20th High School Reunion and a Memorial for a friend, Dyana, from my class, who just passed away after a long battle with cervical cancer. It was so good to see so many old friends -- even though the Memorial was sad, it was nice to be there for it. Being out of town means missing lots of things I wish we could be there for.

One of the things that struck me while in Baltimore is how Amelia's younger cousin, Maya (2) has finally passed Amelia. Amelia has been somewhat competitive with Maya in the past and would vie for Maya's brother's attention, Ezra (5) (who is off doing many "boy" things these days, very understandable:). But Amelia is now interested in this cute little girl, who is on the fence about holding Amelia's hand because "she hurt me". We explain that Amelia doesn't mean to and that she loves Maya -- but I get it! At 2, I'm sure I wouldn't want to hold hands with someone who holds my hand too tight either. Maya also wants to know "why doesn't Amelia talk?"

Before we start saying "awwww, that's too bad" I must go on to tell you that as cute as Amelia is -- she is also a bit of a hell raiser at school! (That's my girl) Nestor and I went up to the school to pick Amelia up for a doctor's appointment and I was watching the kids during circle time from the doorway. All these sweeties are sitting in their adaptive chairs, listening to the teacher recite a story and interact with switches and such when I witnessed Amelia reach to the boy next to her -- who was just sitting there minding his own business -- and grabbed his bib, yanking it to her. Poor thing! All the nurses and attendants sitting there got the fabric out of her little vice grip and restored order. Everybody laughed! OY! Obviously she didn't mean to hurt anyone...but she was curious and she wants what she wants, when she wants it!

In terms of health, we've been good! Six weeks of antibiotics will do that! She finishes next week. It's part of the new regimin our Pulminologist put Amelia on for a chronic sinus infection which, we believe, is due to reflux. We are still doing the Vest and Cough Assist 2x's daily. As we gear up to start a new round of tests (they will inject radioactive liquid thru her G-tube, wait, and if it shows up in her lungs we know she's refluxing) -- to find out whether her fundoplication has come unwrapped or loose, or if she is just aspirating on her own secretions...you get the idea. Anyway, hopefully we'll have more answers in the next couple weeks.

Amelia's been doing lots of grabbing at everything, everywhere, all the time! I love it. She also has a new found interest in dogs. We take Amelia to the puppy store windows on Christopher Street all the time and she loves watching the pups. She puts her hands on the glass windows -- and I have to say she's quite popular because she has more brightly colored toys on her stroller than most kids have in their toy chest -- hint, hint -- puppies love that! They come up to her from behind the window, eying her ball and rag doll. Fun! And there are a couple big dogs in our building who see her off to school most days -- Chloe (Boxer) and Marshall (big Labradoodle) -- she like to pet their noses! I would love to get her a service dog one day, down the road -- seriously down the road! But how fun would that be? I'd absolutely have that pup doing Amelia's laundry, making her bed, etc. I can just see it now with one of those Donna Reed aprons on. Is that wrong?

Happy Thanksgiving

2009-11-24T21:37:00.002-05:00

This week is flying by and before we know it we'll be packing luggage, loading up cars and shlepping to friends/family/loved ones to eat/drink/eat...you get the picture. I have begun the preparations for leaving for a long weekend. A trip to the pharmacy to load up on Amelia's medications, two trips to Loehmann's (I had to buy birthday gifts...and I just happened to find some cute things for me!) and tomorrow -- build an ice cream cake, laundry and PACK!

Thursday we will trek to my niece & boyfriend's new house in Jersey City as they host their first big Thanksgiving dinner and then take off afterwards for Baltimore to visit my family. Really looking forward to it. My sister had surgery on her thyroid last week so it will be good to see her. Also, my 20th high school reunion is on Saturday and I have been looking forward to it...still am...but...

On Monday morning Dyana Eckstein, a friend from high school, lost her battle with cancer. She was 39. Dyana wasn't a close friend of mine. We hadn't spoken in years. We were Facebook friends and I had wished her a happy birthday not even a week ago....but she was a dear friend of several of my dear friends. We went to the same parties in school, then to the same bridal and baby showers and bachelorette parties. We were always around each other in our circle and I liked her. I knew she had been sick on and off for the past several years through our mutual friends, but I thought she was in remission. I didn't realize things had gotten so bad that she was in her last efforts to find relief through clinical trials at NIH. One of our mutual best friends, Bethe, had been in daily contact with her. When I saw a post on Facebook, "RIP Dyana" yesterday I flew to the phone to call her. She told me it was her. I am so sad. Whether or not she and I were close, she was a part of my past -- we were girls together. For the girl she was and the woman she became....for the battle she waged and lost...I am sorry for her and for her family and friends...most of them my good friends. I know she touched so many people's lives and will be missed sorely. I also know she was in pain. She told Bethe that she knew her life wasn't about longevity -- she just wanted to make it to 4o.

So this Thursday, when families across the country sit down together, to give thanks and look across the table at each other -- stop and really take it in. We are in a crappy economy. Unemployment is up. We're in a seemingly endless war -- but we have so much.

For those who are by my side or sharing the holiday someplace else this year -- or who are no longer here with us...I want to send you my love. Thank you for all you have given me. I hope to live in the moment during this holiday season -- snapshots to carry with me, to remind me of all I have.

How do we cope?

2009-11-09T12:42:00.004-05:00

Since Amelia was born, so many people have said things to me like "Amelia is so lucky to have such a strong mother," "You do so much for her," etc. and my response is always the same: "What choice do I have? Any parent would do the same. Whatever it takes!"

Last week an old friend 0f mine stopped by with her daughter and boyfriend. She and I have been in each others lives for over 15 years. Crazy! Lots of fun times and too many adventures to mention. We hung out at our little apartment for awhile and when 2pm rolled around, we all went downstairs to wait for Miss Amelia to come home on the bus. Amelia's OT was due at 2:30pm and our small apt. got even tinier. I thought my friend and her posse were going to take off when the OT came, but to my surprise, they stayed. They stayed for the whole session! During Amelia's therapy session, my friend started talking about her nephew, we'll call him David.

David has Cerebral Palsy too. He is 3 now and has aged out of Early Intervention. My friend is sad, angry, frustrated, etc. because her sister-in-law has not transitioned him to the next phase of schooling - CPSE, ages 3-5 years old. David is not receiving any therapy now. David's mother also has a 5 year old daughter who she has not placed in Kindergarten yet either. She doesn't want be apart from them...but isn't proactive in do anything to socially or physically help them either because she has a painful Thyroid problem and doesn't have the physical strength or energy. David is non-ambulatory. My friend told me that when David gets up in the morning, his mother puts him in a laundry basket padded with pillows and sets him in front of the TV to watch "The Wiggles". David's father, my friends' brother, is never home -- he disappears to play golf, play in his band or go to work. My friend is stuck in what to do. She and her Mother (David's grandmother) have tried over and over again to talk, yell, demand, etc. that these parents take action and DO SOMETHING! They are at a loss. Do you call CPS?

Incredibly, this family did do a huge fundraiser last year and raised enough money to take David to China for a stem cell transfusion-- which is so wonderful. They just got back and my friend stated that David feels very different to her -- stronger. Maybe this will be the motivation his parents need to get him into the right program and resume his services.

Onto a personal moment of bragging....my friend video taped some of the amazing things that Amelia was doing with her OT on Friday in hopes of showing it to her sister-in-law. During the session, Amelia decided it was time to throw down books out of her bookcase (which is across the room from where she was) so she belly crawled over the bookcase. When she got there I told her to "sit up to get the books" and did a countdown (she loves 3-2-1) and SHE DID IT!!! I was shocked that she actually listened to me and did something when I asked her to (it so rarely happens that anyone in my house listens to me;).

All this to say, I know so many mom's -- with typically developing kids and with kids with special needs and I have always taken for granted that we all respond the same when it comes to giving our kids everything they need to succeed. To be the best they can be. I can't fathom not doing that. How can you not rise up to the challenge and fight to give your child mobility and language -- in whatever form that is.

A perfect example of this is my friend, Jodi who lives in Italy and is the mom of two adorable and wonderful kids. Her son, Jordan is deaf and uses a cochlear implant (see the link to her blog below -- it's fantastic!). It has been a success for him. Jodi has worked tirelessly from her little town in Tuscany -- traveling to Rome, Pisa, etc. - fighting, talking, pleading, crying, etc. to doctors, administrators, mayors, presidents, etc (you get the point!) to implement a newborn hearing screening for babies, when they are born, before they leave the hospital to go home. She has had incredible success and many cities in Italy have fallen in line and are creating programs for mandatory hearing screenings. Thousands of families will be better off because of Jodi. WOW!

I have to say that somewhere in the middle is Nestor and I. We schlepp Amelia out to hippotherapy (equine assisted therapy) on saturdays...if it's not raining, too cold, if Amelia isn't sick or if the PT who runs it isn't away. We have done 98 dives of hyperbaric oxygen therapy, a few sessions of acupuncture and craniosacral therapies each and three months total of Therasuit/intensive suit therapy through our friends at Therapies 4 Kids. I have Amelia on 10 supplements daily (muscle, overall health, antioxidants and brain enhancers) along with a full regimen of daily respiratory and standing therapies. She goes to school 5 days a week from 8:30-2pm and comes home for more therapies. Amelia's teachers come 5x's/weekly and her PT (Physical Therapist), OT (Occupational Therapist) and SLP (Speech and Language Pathologist) all come 2x's/ weekly (the sessions are 60 minutes).

We know about stem cells in China (stem cell trials from a child's own banked cord blood is the only stem cell therapy happening at this time in this country for children with CP -- at Duke -- and we never banked Amelia's cord blood) and robotics (see a couple posts ago). We know there is aquatherapy and a billion other therapies we have yet to explore.

But today, my little girl got off the bus in the heart of the West Village, NYC -- in one of the greatest cities in the world. I took her to the park three blocks from our little apartment -- at two blocks away, Amelia starts to squeal in delight, knowing the direction of the stroller. Once in the park, I headed to the swings and parked our stroller. I sat myself down on an old fashioned swing, placed my sweet girl in my lap and away we went! I held her with one arm and the chain of the swing with my other. I pumped my legs and swung higher and higher. Amelia gets so excited! She straightens her legs and moves her head side to side in a "no-no-no" pattern (it's a way of self stimulation and something she does when she's deliriously happy or seriously unhappy). When we've gotten enough momentum, I straighten out my legs so she can stretch herself out and lounge. There is laughter, happiness and cooing -- from both of us! I feel so overwhelmingly grateful to be able to give her these moments of weightless joy and flight, I could stay on that stupid swing all day! My arms get sore and my back is breaking, but who cares!!!! What better therapy could be out there than this?

So much to say

2009-10-30T13:24:00.004-04:00

Firstly, let me say that Nestor has come home!!!! He had a terrific time down in Kentucky and Louisiana. I know he's happy to be home...but I also know he had a pretty rip roaring good time down there. Good eats, good sleep and treated like a king. Hey -- we have that here, just not the sleeping part...that is, until last night!!!!

No, no, get your mind out of the gutter. What I am talking about is my second topic here: Amelia has been soooooo sick since she got off her antibiotics after her hospitalization. She has been up nights unable to get comfortable. I've been suctioning her with the suctioning unit we've barely looked at for a year and a half. I've also been putting her on oxygen the last several nights because her oxygen saturation has been horrifying whenever she falls asleep (the lowest you want your saturation to drop is about 92, she's been dropping to 84/85) . So there's been no rest for the weary. Lots of breathing treatments too. Amelia seems to do great during the day while she's up and active (as most of us are when we're sick) but we just couldn't figure out what this new thing is -- she is sooooo unhappy.

In swoops Carrie (insert "Hero" music here) , a great friend who has a son with lots of similar issues to Amelia. Carrie called me the other day, I told her what was going on, she insisted that we take Amelia in to see her son's Pulmonologist, Dr. Marcus -- all the way out in Brooklyn, mind you. She claimed that he is "THE BEST"(by the way, she always claims this...and she's always right!). So yesterday was the big appointment.

Our lives have become a routine of shlepping Amelia from specialist to specialist. The times that you actually leave someones office and think "Wow, that was time well spent" are few and very far between...yesterday far surpassed any experience we've ever had thus far! This office and these professionals were incredible. Nestor and I were speechless! The Nurse Practitioner, Kathy came in and asked us all the important questions. Then Dr. Marcus came in, Kathy gave him the lo-down, he examined Amelia and then said "Let me give you the answers of what is going on here." Nestor and I just looked at each other, then at him and said, "Oh God, yes please!" Basically, he broke it all down to her GERD issues, reflux. All reflux related. The fundoplication Amelia had as an infant has most likely become loose over time and growth (it's where they take the top of the stomach and sew it around the base of the esophagus so when the stomach becomes full it cinches around the esophagus -- not allowing anything to go up it -- hence, alleviating reflux issues). Sooooo...the pneumonia was brought on by micro-aspiration of acids from her stomach, her airway is reacting to the acids -- there is possibly scar tissue forming in her airway from the acids going over all the time, therefore making it smaller and harder to breathe with the reflux and secretions in her throat and she has a chronic sinus infection from the acids going up into her sinuses when she refluxes. Everything is red, swollen and full of secretions! My poor baby. Sooooo....he changed up all of Amelia's meds, put her on an antibiotic for a 3 or 6 week course (not sure yet, have to have a CT scan next week to see how deep the infection is in her sinus cavity), Prevacid and Astelin. We're getting two devices: a Cough Assist (helps her cough) and a Vest (vibrates the chest and loosens mucous plugs). Both will help Amelia get her secretions up and out. We weren't happy to learn about all the things plaguing our little girl and that we're now going to have to deal with but at least it's nice to know what's happening so you can deal with everything appropriately. It makes me realize how unbelievably mismanaged Amelia has been.

I gave her 2 doses of the antibiotic, 1 dose of Prevacid and Astelin yesterday...I have a new child.
Amelia not only slept through the night, but she sounded amazing!!!!! So clear! Unbelievable.

So she was able to go to school today, dressed in her Halloween outfit -- not costume. Nestor is not a big believer in dressing children up unless they're in on it too. I get it, so we compromised and got her a cute outfit that is in the spirit of Halloween! So cute!

Third, and lastly, we have postponed our move to LA for a few months or so.

I have been in close contact with lots of wonderful people out in Los Angeles and the warnings are the same:

California is broke.
Services are being cut left and right.
The amount of therapy Amelia receives in New York will not be duplicated.
They don't use Speech Therapists out there, they have Occupational Therapists with "feeding specialty". That's 4 hours weekly of Amelia's mandate - GONE!
The big one: RESPITE IS GONE! Kaput! Not happening! We have 20 hours weekly of respite here.

I am afraid that if we give up services to move out there now, even when the State bounces back (and it will) and those programs are restored, we will not see those therapies and respite again. Once something is given up -- it is very difficult to get it back. I would rather wait a little longer and go out there on the upswing of services and therapies being reinstated. It would have been nice for the three of us to go out there as a family (Nestor has to go out there for Pilot Season in Jan/Feb) but it is for the best to wait a little longer until things are more stable.

"Tanks for weading my blog!"

Robotic therapy holds promise for cerebral palsy

2009-10-27T17:29:00.000-04:00

This was shared with me by another Mom. It's very hopeful to see what's out there for our kids.

Robotic therapy holds promise for cerebral palsy

Better Now

2009-10-12T13:37:00.004-04:00

Here she is! Back and better than ever!!! The girl is incredible.

We weathered the storm, yet again. Our wonderful in-home respite worker/friend, Jozette, was able to meet me at the hospital last Monday and help Amelia and I home from the hospital. My Mom arrived that evening from Baltimore and actually just left this morning. Between My Mom, Jozette and Amelia's former-full-time nurses, Lia and Keisha - Amelia is back to her old self. She's tearing up the joint and voicing her opinions on which cartoons are worth her time to watch. The other lovely thing she's been doing is sleeping in until about 7:45-8am. LOVE THIS!!!! I'm a little bummed she's going back to school tomorrow because I know I'm gonna have to start waking her up (and myself) at 7am. Oh well...it was nice while it lasted!

It was really great that my mother was able to make it up here and stay for so long to help Amelia and I out. We are very grateful for the extra hand -- and thanks to my father for the loan-out this week...we sent her home just in time for your cataract surgery on Wed (!!!)

Yesterday Amelia, my mom and I went to my neice, Karena and her fiance, Jonathan's, new house in Jersey City for supper. My sister-in-law, Evelyn and her husband, Carlo were there and we met Jonathan's family for the first time. It was a really nice afternoon -- wonderful food, terrific company and I have to say, Amelia was sooooo good! She's always good, but she was really responsive, happy to be around everyone and just had an overall good time. No cartoons were put on -- which is sort of a huge thing. Normally, when we sit down to eat, I'll put on her mini DVD player -- otherwise I have to do "The Mommy Show", where I don't get to eat much, everyone at the table has to tolerate my innane songs and Amelia just gets bored anyway. But yesterday, she sat in her stroller at the table, listened, laughed and enjoyed being with her family!

Nestor will be coming home tomorrow for a couple weeks before heading back to Louisiana for another week. It will be great to have him home -- I'm definitely looking forward to a little time at home together.

NOTE: Thank you to everyone who offered up their help last week. I appreciate it more than you know. It's nice to know we have so many loving friends and family who will offer to go to such lengths and effort to support us. Your phone calls, blog comments and emails count too! We are truly blessed!

Fear

2009-10-04T11:54:00.003-04:00

As a child, my brother had this rubber caveman mask that was the most terrifying thing I had ever encountered. I wouldn't go into the basement because I knew it was down there. One time, one of his friends called my name from the back of the basement, I carefully and slowly went back and he jumped out wearing the goddamned thing! I freaked!!!! I was crying inconsolably for the longest time (in reality, it was probably only a few minutes -- but in memory, I never really got over it).

As a teenager, I was in a traumatic automobile accident with my cousin's girlfriend and best girlfriend from school while visiting my cousin in Florida. We were cut out of the car with "the jaws of life." I fractured my transverse process, had a hematoma in my kidney and had never known pain like that before. I didn't know if/when the pain would go away or if I would even live to see tomorrow.

As a twenty-something, relationships began and ended. The raw ache it would leave behind each time got deeper and deeper. The notion of opening myself up to the next person seemed an insurmountable feat. Why would I even do that again? It will just end badly. I'll have that hole in my chest again that makes me feel like I need to stop breathing and that life will never be happy again.

At thirty five I had Amelia. Fear has a whole new meaning. Becoming a parent does this to you -- whether your child is healthy or not. Everything you ever thought about becoming a parent no longer applies and everything your parents ever did that you thought was crazy-overprotective or just plain crazy, makes sense.

Friday night/Saturday morning, at 3AM, I knew real fear. I heard my little girl fighting to breathe. My regular course of action, as we've been down this road many, many times with her small, reactive airway, is to give her motrin or tylenol and a nebulizer treatment. Normally, the treatment calms her breathing as the her fever is reduced by the meds and afterwards she goes right back to sleep. Not that night.

The treatment wasn't working. Amelia started to do something I've never seen her do before. She would tense her whole body, make a guttural cry out and cough, A LOT. Over and over she did this. I turned on all the lights so I could really see her coloring and her lips were darker than normal and she was shivering horribly. Without hesitation, I dialed 911. It seemed like too many minutes between me dialing 911 and a voice coming onto the phone. I stayed on the phone with them and was assured there was a team of emergency workers on the way.

I was so sure, as I stood there next to Amelia's crib, that I was losing her. She looked so bad. No longer making guttural sounds, her eyes were rolling up into her head and she was just struggling to breathe. I was racking my brain trying to remember child CPR. I kept repeating "stay with me Amelia, stay with mommy, little girl." The police arrived first, as the 6th Precinct is downstairs, then EMS and the Fire Dept. They took the nebulizer mask and attached it to the oxygen tank and we carried her out to the ambulance. Once inside, I told them I wanted to go to NYU because that's where all her Drs. are. When we reached 14th street the paramedic told me we were going to the hospital closest on 16th st., Beth Israel.

When we arrived at Beth Israel, they put us into the trauma room and started working right away. Heavy breathing treatments, IV and oxygen. Amelia's fever was 104. After a few hours of this, we were transferred up to the PICU. A full regimen of the same continued. There was no sleep -- which was fine for Amelia because she was all wired up on albuterol. Her fever was up and down yesterday, we had two more scary episodes. And so the day continued.

Coffee, cartoons, a private room and an egg and cheese sandwich were our luxuries yesterday. Then, our upstate friends -- Amelia's adopted Titi (Aunt) Terry called and was on her way into the city to lend her support for the afternoon. I had several offers from family to come up from Baltimore (thank you and I love you!!!) but it all seemed too much. This was perfect! Terry's son drove her in for several hours and I was able to run crosstown to shower, pack a bag and get the car, while Terry stayed in the room with Amelia. When I got back, we ordered in some dinner and sat around and "gibber jabbered" for awhile. I think the bit of normalcy was good for Amelia because she perked up seemed much better. She sat up in bed the whole time watching cartoons and playing with her couple favorite toys I brought back for her.

Last night was pretty good, considering Amelia had to have multiple breathing treatments, vitals checked, fights with cannula's and overall hospital stuff done all night long. No scary episodes and we both slept quite a bit. She sleeps even now. Ahhh...there's nothing more restorative than sleep. Amelia's breathing on room air now, hasn't needed O2 since we woke up this morning and they gave her her first feeding late this morning. I think they're moving us out to the Pediatric floor today and if all goes well, we should be home tomorrow.

Home sick.

2009-09-27T15:24:00.003-04:00

Amelia and I are both sick and stuck inside on this rainy day in New York City. I'm trying to be slightly productive between blowing my nose and wiping hers constantly. I did, however, go thru a stack of papers and came across her school photo from last year. It's not the greatest pic of Amelia, but it's her very first school photo and is a milestone.

The California Project

2009-09-23T11:57:00.006-04:00

The Serrano's, it seems at this point, are Los Angeles bound. That's right, you heard it here first. It looks like we're hitching the horses to the wagons and heading west. We're hoping to be out there by January, so Amelia can start school when they return from winter break. So much leg work has been done already and we have a lot of work ahead of us.

This conversation first began around March or so. Nestor was in LA for pilot season (that's when all the networks green light pilots/shows for the fall and actors swarm to the sunshine state to audition and hopefully book a pilot, which will then, hopefully, get picked up as a show) and he mentioned to me that he and his Manager were discussing the climate of the industry and where it's heading. It's been a rough couple of years for us for several reasons:

1. The Networks/Studios are not paying the kind of money they once did. Almost everything is scale +10% (the 10% is to pay your agent/manager their percentage) -- no negotiating.

2. Most of the shows we watch are shot in LA, with the exception of "Law & Order," "Ugly Betty," "Gossip Girl" and a couple other shows. Not much steady work for Guest Stars, which are our bread and butter jobs. Although Nestor used to be able to work out of NYC -- Networks no longer want to fly actors out to Los Angeles, rent them a car, put them into a hotel and pay them per diem -- so they go for a "local hire." For awhile, Nestor was able to work as a local hire and would make all the arrangements for himself, but that's no longer financially worth it. Also, Productions don't like to be "out of control" of their actors (ie. his flight gets delayed or canceled -- at least if they're calling the shots, they can get him on another flight, etc.)

3. Everyone wants to do TV! The jobs that used to fall into Nestor's lap are now being snatched up by film actors who used to look down on TV. Everyone has/had a series now: Harvey Keitel, Christian Slater, Holly Hunter, Lawrence Fishburne, Chris O'Donnell, etc. Those actors are now looking for a steady gig that keeps them home with their families -- not on location half way around the world. Nestor needs to be in LA so that he can walk into the room and meet the Producer, Director or Writer in person. Not on tape from the Casting Director's office in NYC. It makes a big difference when it comes down to booking a job.

There are so many mixed emotions with this decision. Obviously, we love New York. Our families are based on the East Coast. I've lived here for 20 years -- over half my life. I love the energy and action. Amelia is in a wonderful school here, has an incredible team of therapists, doctors, nurses, respite caretaker and has so many remarkable services here.

California is broke. Nestor's amazing cousin, Colette, who lives in Calabasas (in the Valley) and works in the school system has been a tremendous resource and inspiration. She has an Autistic son who has grown up to be a mainstreamed, extraordinarily high functioning teenager -- and I am not exaggerating when I tell you that the credit goes to his petite mother who screamed until she was heard. Colette has sent me every name and contact number she could find to help me. She even found the school (Sven Lokrantz, in Tarzana) that is the perfect fit for Amelia. I have spoken to the Board of Ed out there and they are awaiting Amelia's current IEP (Individual Education Program) which is a Federally recognized document -- so the funding will come from the Federal, not State, Government (PHEW!) and Amelia will receive all the services in her mandate.

The kicker is The Regional Center. In California the system for people with disabilities is different than most other states. Out there, any services received outside of school is funded by The Regional Center and unfortunately, that is funded by California State. The cuts have been deep. However, I spoke with a lovely woman yesterday who told me that families are getting what they need -- it's hard for me to believe that, but she has told me that they are on the upswing and children are receiving the therapies and respite they need. I guess I have to throw positive energy out there and hope for the best. Colette has assured me that Amelia will get everything she needs...just keep shouting till you get it. I have no problems with that!!!!

The upside of moving is that the weather is wonderful out there -- maybe Amelia won't have to live on 2 breathing treatments a day. We'll be able to buy a house (the housing market is still really, really down out there, good news for us) and move out of our little 1 bedroom, 600 sq. ft. apt. We do have cousins and extremely close friends out there, who stood by us -- so fiercely, when Amelia was born. Also, with Amelia being born out there, we have a whole team of doctors in place.

Nestor has always relished the luxury of living in NYC and working in Hollywood -- or whichever filming location. But it looks like that has changed -- at least for now. We have talked for endless hours about the move, house hunted online and sadly, broken the news to our families. I am so nervous, excited, sad, apprehensive and giddy about the whole thing. Appropriate, for our next big family adventure.

He tells me we'll move back to New York one day, I think, I hope we will.

Snorting Stem Cells: The wave of the future?

2009-09-13T08:24:00.002-04:00

This is really incredible research.

We are trying to figure out how to dress Amelia up as a German mouse. Any thoughts? I'm thinking lederhosen and Mickey Mouse ears.

Snort stem cells to get them to brain - health - 10 September 2009 - New Scientist

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Last of the Summer Fun

2009-09-08T18:46:00.002-04:00

Amelia and I on the Tin Lizzie's in Ocean City, NJ saying "Hi" to (Aunt) Jackie and (cousin)Ezra

The week before last, we went to Margate, NJ for a few days and hung out with my folks and sister, Jackie's (above) family. Always fun, but got rained out from going to "Storybook Land" which is where we had so much fun last summer. We went to the Aquarium instead -- although I think Amelia would have had more fun on some rides. Oh well, next year.

It was pretty quiet last week. Just hanging around and seeing friends and family. Went to the park a lot and had drinks with a girlfriend on Friday night. I actually trekked all the out to Brooklyn!

This is a group that we stumbled on last Wed. evening. Magic hour at The Hudson River Park. It's a group of Tango Enthusiasts who go to different venues each day of the week. It was really beautiful. Amelia is a superb dancing partner! Only in NY folks...only in NY!

Not too much else to report, which is good! School starts tomorrow and I couldn't be happier. Don't get me wrong -- we've had a very relaxing couple of weeks -- but I am really ready to get back to my own morning routine. Also, because Amelia gets so much of her therapy and socialization at school I always feel like she loses out on a lot when she's home for such a long period of time (3.5 weeks) around us boring grown ups.

Big shout out to Ezra who turned 5 yesterday!!!!! Also to my MIL, Regina who had a birthday yesterday too -- turning...more than 5;)

Vacation 's all I ever wanted...

2009-08-20T17:15:00.009-04:00

Well, Amelia finished summer session at Roosevelt and has three and a half weeks off until school starts again. Things have been really hectic here and it's been hard to muster the energy to blog it all down...but here goes.

Since we last saw you, my cousin Jen came up to NYC and picked Amelia and I up and drove us down to Baltimore for my Mother's Bat Mitzvah. My brother, Jeff and his family were already there from Albuquerque for the festivities. That evening we went to my sister, Jackie's for Shabbat dinner and later that night, Nestor arrived from Puerto Rico. The next morning was the big event and we all arrived on time, as directed, by 10am. Mom claimed that she would be up, doing her Torah portion by 10:15am -- don't be late. Well, Mom didn't get up until around 11am. We couldn't have timed the whole thing better...at 11:02am, Amelia, my niece, Maya, Jen's son, Austin, etc -- all the kids had the 1 hour meltdown and had to go out into the hallway. HILARIOUS! It was like a bad comedy to see all of us Mom's making a beeline for the exit with screaming kids in tow. They all had a 1 hour limit and it's just too bad for everyone else. The gathering after was really nice. It was wonderful to see all our family and friends on such a joyful occasion.

On Sunday we ventured back to NYC because Amelia had her last week of summer session. She did really well. Along with everything else that's been living at school, all her art projects were sent home. So now I have Styrofoam bowls with shredded green tissue paper and cutouts of birds, a ziploc bag with clear hair gel, red glitter and plastic fish, loads of colored in pictures with feathers, felt, buttons, beads, bows and pom poms glued on and last but not least, two big, clear but blue tinted plates, which have been glued together edge to edge, with cutout fish inside -- so it looks like an aquarium. Her teacher comes up with amazingly creative projects -- our little apt is filled up fast! But I love it all!!!!

This week has been our first official week of vacation, although, we did take Amelia to the surgeon's office on Monday to have her G-tube replaced. It was slightly traumatic and I was pretty sick about it all day until we went. For those just tuning in, Amelia had four surgeries done just under 3 months ago -- one of which, was sewing up her existing G-tube site and creating a new one, just above the old one. This had to be done because Amelia's old site had become too big and the gastrostomy tube (GT) was no longer working properly (milk would pour out from around the outside of the tube). So, the surgeon did the new site and put in a new GT called a Bard button. Amelia's last GT, called a Mic-Key, could be switched out by us at home because it has an inflatable balloon (you place the uninflated balloon into the site in the stomach and then fill it with water -- the balloon is on the inside of the stomach and holds the GT in place). The Bard button is different, in that, it is put in through the esophagus (she was under anesthesia for the surgeries) and is held internally in place, at the site, by a hard, mushroom shaped piece. The reason the Bard was put in is because it is more stable than the Mic-Key -- it won't come out -- and while the new site is healing that's really important. However, these buttons all need to be replaced every 3 months for sanitary reasons -- so we knew the Bard was going to have to come out sooner or later. Well...I had no idea how they did this. Silly me, I thought they would take it back out through the esophagus. Oh no, they yank it right out. The Nurse Practitioner, who is a robot -- I swear. Even she told me (in her androgynous voice) "this is gonna hurt!" She did it so fast I didn't even know why Amelia was screaming until I saw the gauze over the site and saw the NP reaching for the Mic-Key to insert it. I welled up a little and Nestor was holding his head in his hands. OY! Enough already.

So now we're just floating through the week until we go to the beach, for a few days, next week. Our in-home respite worker, Jozette, the extraordinaire, has been here this week to give us a breather in the afternoons --which is sooooo appreciated!

Yesterday, Nestor and I went up to The Highline. For those of you who don't know about this, it's the newest attraction in NYC. The city wanted to tear down some old elevated train tracks. People in the community protested with the idea of creating a usable space out of the deserted stretch of railings and concrete, which starts at 12th St and 10th Ave. and goes up into the 30's. What has been created is really incredible. Walkways have been created, utilizing the old structure and wild flowers and grasses have been planted. There are benches and wooden chaises that look out to the river and surrounding buildings. There are huge buildings that were built over the tracks and now provide a shady underpass. When Nestor and I went there yesterday, there was a downpour, a real summer storm and we, like everyone else there, scurried under one of these big underpasses, snagged a cafe table and two chairs and waited it out. What a terrific place to people watch. I recommend it if you're visiting. (See pics)

From the street

Up on The Highline

"Hey Kid, don't play in the tracks!!!"

Wicked

My Guy!

Artistic shot

Chick Flick + Novel = Teary; WARNING PMS ZONE

2009-08-04T12:41:00.006-04:00

"Hey, get out of my water glass!"

"Okay, you can have it!"

Nestor left this morning to shoot in Puerto Rico for the week. It's always stressful the night before and I usually don't sleep well. He had a car pick him up at 6:30am. Around 6:25am he came into the bedroom, gave me a kiss and hug goodbye, then gave Amelia a kiss and slipped out the front door. It's only a few days, but I always have very mixed emotions about his leaving.

He's going to work and that's always priority around here...it's the leaving. As Mom, I don't get to leave. I'm here...ALWAYS. Day in and day out, that's what I do. It gets to me, because I don't even know how I could separate myself to leave Amelia. Nobody knows her sounds or coughs like I do. Amelia can't tell us when she's not feeling well...but even in my sleep, I can hear her breathing change and I know I need to wake up and give her a breathing treatment.

The thing is, I know for most of my friends and family, who have kids, that this is a temporary setup. There will come a day when you won't need to listen for your baby's breathing patterns, they'll call out to you or get out of bed, walk to your bedside and get you. I pray for the day that this happens with Amelia.

Which leads me to my teary afternoon. Whenever Nestor leaves town, I take a little opportunity to watch a chick flick that I know he would forbade me to even play on our TV. Today it was "Mama Mia" (I live in NYC and am the last person on earth who hasn't seen the B'way version). I was happily watching this flick when it got to the end, where Meryl Streep is singing to her daughter about all the cherished memories she holds as snapshots in her mind. It is here that my floodgates opened up and whoosh...I couldn't stop crying. I tend to not think too much about "what will be" because to be honest, with a special needs kid, you just don't know. The greatest things could be just around the corner for Amelia, but as I watched this mother get her daughter dressed for her wedding I couldn't help being sad. I don't know what lies ahead for my little girl and I want her know every joy life holds.

On the other hand, being the glutton I am, I am also reading a novel written by one of my all-time favorite authors, Kathryn Harrison (read Poison if you want a really fantastic intro to her writing), called Envy. I haven't read much yet, but it's about a married Psychoanalyst, who is a sex addict and a father of two healthy children(boy & girl), in which the little boy drowned. It's the unthinkable to lose a child. So here I am on the other side of the spectrum, crying while I read my book, thanking my lucky stars for the gift I have, Amelia.

In other words, my child may never live the life that I imagined for my child when I was carrying her in my belly. I don't know if Amelia will walk, talk, eat, go to college, fall in love and get married, have children...but she will live the fullest life we can give her. The roller coaster that is Amelia, is the most exciting, fearful, tearful, exhausting, ecstatic and blessed ride I have ever been on. Ahhh, parenthood...I guess none of us ever get to actually leave it...EVER!!!!!

Lately...

2009-07-28T11:31:00.005-04:00

Amelia and Daddy:
Lazy Sunday at the Hudson River Park

Amelia is doing really well -- besides getting over a pneumonia, she's been doing great. The newest thing Amelia is doing is this acrobatic rolling/sitting up/belly crawl thing. She doesn't do it all the time, but it's starting. Although, the sitting-up-in-the-crib thing is a pretty regular routine now.

Amelia loves school and gets really excited when the bus comes in the morning to take her. Here's what happens:

8:30am - Amelia's nurse, Luiza arrives and buzzes up to me to let me know she's arrived

8:40am - I put Amelia in her stroller and we head downstairs to meet the bus

8:42-9:15am - the bus rounds the corner onto 10th Street from Hudson St., I pick Amelia up out of the stroller, while Luiza grabs her Tinkerbell backpack and feeding pump backpack. We carry her to the little bus and I pass Amelia off to the lovely woman who takes her and straps her into her carseat on the bus. Meanwhile, as Amelia gets strapped in and Luiza gets situated, I run around to the window where Amelia sits (just behind the driver) and wave...blow kisses...and make an ass out myself for the whole neighborhood to see! I love it and it makes her and all the other kids crack up.

HOWEVER, somewhere in this lovely morning routine -- some bitchy, grouchy, dumbass cabbie, scooter driver or whoever will inevitably shout out TO ME ...."awwwww, come on lady. WTF????" To which I respectfully yell back "REALLY? You think they're waiting for me to finish my goodbyes, Jackass????? They're strapping her into her seat, Moron!!!!!" Yesterday I even had my neighbor downstairs with me. She gave our verbal assaulter the finger. Ah, I love NY!

Yesterday, while I was shouting at stopped traffic, Nestor went off to play in the 8th Annual Tony Darrow Celebrity Golf Tournament for UCP, NYC. Nestor's been doing this fundraiser outing since it started -- long before Amelia arrived in our lives.

Back story: It was at one of these tournaments, 3 years ago, when we had first returned from California (where Amelia was born) that Nestor bumped into Ed Matthews, the CEO of UCP, NYC. He asked Nestor how things were going and to be honest, we were in a very dark place at that time. Ed asked "how can we help?". Three days later, Ed, his second in command, Linda Laul and their "get-it-all-done-go-to-gal", Chrysanthia Kaputsos were sitting in our living room, cradling our infant girl and putting together a plan for us. UCP, NYC has been incredible to us, holding our hands through some of the most slippery slopes we've ever had to navigate, as parent's of a child like Amelia -- and they continue to do so. It feels like there is no way they could possibly give of themselves as much as they've given to us day in and day out ...only to come to realize that this is, indeed what they do for everyone. These folks at UCP are angels.

Back to yesterday....Nestor left early in the morning with our neighbor and good friend, Joe Lisi so that I could have the car to drive out to where they were playing this year (about 45 minutes away) and come to the dinner reception and show in the evening. What a fun time! The food was fantastic (I think I ate 5 lobster tails and who knows how much sushi) and the show was, as always, very entertaining. The acts are always great, but it's the shenanigans that happens between the performances that's always fun to be around. Tony Darrow is known for his wiseguy roles in "Goodfellas," "Sopranos," etc. so he always invites his paisans to attend the fundraiser. All the celebs sit together and it's really a blast.

There is always a child honored at the event and this year it was a handsome, little boy named, Maximilian. He's turning 5 on Thursday. Max is small with little head control, he can't move his arms, he is in a wheelchair and his speech consists of sounds and lip movement, with no audible words. But I'll tell you what... he has the sweetest smile, charming personality and is so communicative in his own special way -- it lit up the room and everyone in it. And he is loved. So loved by his wonderful parents and grandparents, who were all there. They are lovely people and Nestor and I had the pleasure of speaking with them for awhile.

Nestor will be leaving next week for Puerto Rico to shoot a film for about a week. Amelia and I will be hanging here for those days until my cousin, Jen comes up on Thursday to drive back to MD with us on Friday. The fun thing is that we're going back to MD because my mother is getting Bat Mitzvahed on Saturday. That's right folks, my 68 year old Mother is getting Bat Mitzvahed on August 8th. She's been taking classes for 2 years and the day has finally arrived. My brother and his brood are all making the schlep from Albuquerque, NM for the event. Nestor will fly into BWI on Friday meet up with us.

I'm sort of happy it worked out like this though because Jen and I are best friends. With both of us having kids and being in different states, we don't see much of each other these days, so I'm really looking forward to getting out with her when she gets here. At least for a few hours while Amelia is with her respite worker and in school, Jen and I can get a glimpse of our lives before husbands and kids......

Summertime and the living is...hectic!

2009-07-08T12:02:00.003-04:00

So. Here we are. We've had quite the couple of weeks. Let's begin with the major efforts which was packing up the house upstate. I know, I know -- you're sick of hearing about it. Me too. So let me just give a big shout out to those who sacrificed weekends and holidays to help us make this thing happen.

Evelyn & Carlo/Titi Evelyn & Uncle Carlo
Karena & Jonathan
Mom & Dad/Bubbie & Zadie/Dona Ruth & The Good Dr.
Art & Terry/Titi Terry & Uncle Artie
Josette & Nick

WE LOVE YOU!!!!
WITHOUT YOU, WE WOULD NOT HAVE BEEN ABLE TO DO ALL WE DID!!!!

That said, it's really strange for us to no longer have our beautiful place to go to anymore. Sad.

Moving on. After packing up the house into a Pod and having it picked up and put into storage, we brought several boxes, our luggage and a set of golf clubs back with us into the city and have been staring at them since. We've been able to unpack a couple of the boxes...but a few are now playing the role of "ornamental cardboard." Perhaps a coat of paint and they could live there? The luggage and golf clubs have been strategically camouflaged behind Amelia's therapy equipment in the corner of the living room...lurking under her therapy ball. Not too bad tho considering.

Because Amelia was off of school for a week and a half (6/24 - 7/6) before her summer session started, we took off for a couple of days (packing yet again!) for Baltimore to visit my family down there. We had a nice getaway and got to see everyone. BBQ at my cousins, Mitch, Barbara & Hannah's on the 4th and sparklers in the backyard. Lots of time with my sister, her husband and kids -- whom Amelia adores!

The big bonus for me was getting to see a friend of mine from high school, Jodi who has become such a wonderful friend and huge support for Amelia and I through our blogs(see Amelia's Friends link to "An American Mom in Tuscany: Jordan's Cochlear Implant Story"). She is a dynamic and fearless advocate for her son, who has Cochlear Implants and has inspired me beyond words. Also, I actually got to meet her son and daughter too (I've only read about them on her blog) which was really cool! I think she felt the same way when she met Amelia. We've become invested in each other's lives through our stories and tales...to actually meet the person who inspires it all -- and ourselves -- is really.....cool!

We came back a couple days ago and Amelia started school again. Monday night, Amelia spiked a fever. Tylenol and motrin kicked it. Then, yesterday I got the call from school that she had 99.8, so they gave her tylenol and off we went to pick Amelia up from school and take her to the Drs. office. They did bloodwork and sent us to the hospital to get chest x-rays...and as we suspected, pneumonia. A very small case of it, as we caught it very early. Allow me to give you the back story that a couple of weeks ago Amelia was spiking fevers so we took her in for bloodwork and it showed her white blood cell count was at 33.4 (15 being the norm and 20 considered high) -- so her count was very, very high! Knowing there was infection somewhere( we would have had to have done a battery of tests to find out exactly where -- so we decided to treat the whole person rather than put her through more studies), we put her on 10 days of Biaxin. That cycle ended last Wednesday...so you can imagine that 5 days later, when her fevers started again, we were disheartened -- to say the least. But, we caught it early -- 10 days on Augmenten and she'll be good as new. Amelia seems herself, just with heavier and thicker secretions -- but jolly and happy overall.

I also wanted to mention that I was able to attend the Bris of Judah Shai Leshin a couple of weeks ago and felt so blessed to sitting among all his friends and family. Carrie, Scott and Sam, he's going to take great care of you! My heart is bursting for you all. (See the Leshin's blog "In Through The Out Door" from Amelia's Friends.)

Packing for our lives

2009-06-15T17:18:00.012-04:00

For those who have never seen the house (16 acres, like living in a park!)...

front
back

living room

What a hectic time. Let's just say from the get-go, Amelia is doing great! Her site is healing really nicely. Her eyes are getting straighter as the swelling is going down. We took her to the ENT and she passed her hearing exams with flying colors! And happily, Amelia is breathing out of her nose a lot more now and sleeping much more comfortably these days.

The biggest challenge recently, for us, is getting our house upstate packed up for our new tenants moving in on July 1st. We have 20 years of Nestor's stuff to pack up, 10 years worth of my stuff -- not to mention the stuff that belonged to the woman who sold Nestor the house -- WITH EVERYTHING IN IT! So now I'm sifting thru a lot of her leftover stuff which is sooooo cool. The house is from the 50's and the couple who lived there built it as their summer home. They traveled the world and brought back lots and lots of stuff. Not sure if anything is worth anything, but it's so cute and kitschy -- I just can't part with much of it. There are sheets from the 50's and 60's still in their wrapping along with dish towel sets, aprons, oven mits, dishes (china and depression glass sets) and table cloths from that era. The colors and patterns are outrageous. I just love it all. So we're packing it up with the rest of the junk we have.

We didn't get nearly the amount of packing done this weekend as I had hoped to, but we have family and friends coming up next weekend to pitch in and help get our POD packed up. I did, however, weed through lots of stuff and throw out a ton of stuff. It's just a never ending pit!!!!! Nestor keeps assuring me that it will all get done...I'm not so sure I'm buying it.

We've also been cleaning house here in the apt to fit the stuff we're bringing from upstate into our tiny apt. It's so hard for us girls to get rid things because, unlike the boys, we need our fat clothes! I wear a size 6 right now...but I might get fat again one day and I'm gonna need that awesome size 10 dress. You know what I'm talking about!!! So frustrating. We have a Housing Works literally, downstairs from us and Nestor can't get my reject piles out of here fast enough -- so I don't change my mind!

Nestor is going back to Miami on the 22nd to finish a movie he worked on earlier in the month. He was supposed to go to Costa Rica from there to work on another project, but thankfully it looks like that was pushed to August, so we can get back up to the house when he comes home on the 26th for another few days to finish up the last of the packing.

Amelia finishes school on the 24th for a couple of weeks and then summer session starts on July 6th until mid August.

And me? Well, I'm just trying not to loose my mind in all of this and keep on the treadmill for my 7 miles a day. Oh and we drink wine...or rum...or...

Back to school baby -- oh yeah!

2009-06-04T20:44:00.003-04:00

So Tuesday was Amelia's first day back at school. We drove her as I was too afraid to put her on the bus. The woman on the bus who handles the kids is lovely -- but it's such a hectic couple of seconds as you pass off your non-ambulatory child to this hefty woman who puts them into their car seats, before the bus driver closes his STOP sign to oncoming traffic and I scurry across the street to catch a glimpse of my girl in the window, who laughs at me as I make a fool of myself on the street waving goodbye to her and blowing kisses. But Tuesday we drove her. She did so well that we decided to send Amelia on the bus on Wednesday. I told the bus driver and woman who places the children in their seats that Amelia had surgery on her belly and has stitches there -- and I could see she really placed her gently. THANK GOODNESS! So that's back to normal -- sort of.

Amelia has a new nurse at school, Luiza. She is a sturdy Russian woman who is very sweet, but clearly overwhelmed by the crazy school schedule. Amelia needs a lot of care and Luiza has another little boy who she needs to tend to here and there. But she seems to be getting the hang of it -- as reported to me today. I was afraid she wasn't going to last the week. I'm not sure how Amelia has taken to her, it's hard for me to tell because whenever I see the two of them, Luiza is talking to me about "how hard today" was. On the other hand, she must be bonding with Amelia in some way because Amelia doesn't cry when she sees her -- crying is usually the first sign to me that whoever it is taking care of Amelia isn't making the grade. So we'll just have to see about this one.

All in all, I know Amelia is so happy to be back at school with all her friends. They were so happy to see her too. Amelia's teacher, Patty sends updates daily in her "communication book" (it's a composition book). Yesterday Amelia came home with glitter everywhere...I mean EVERYWHERE! Her diapers were sparkly!!!! So fun!!! Her therapists report that she's doing really well too. I know she's seeing and hearing better and it's really something to see how remarkable her eye contact is since the strabismus surgery. Amazing! She responds more vocally and is into everything. Lots of playing with two hands and incredible sitting up. Amelia's belly is still sore. Her norm is to lie on the playmat on her belly -- can't do that -- so she's sitting up so incredibly, for an hour or so, just playing with her toys. We're also noticing a lot more mouth breathing and she's much quieter than she was.

Next week we go for our follow up appts and to get the stitches out of her site. That should make her more comfortable.

Also, we rented out our house upstate so we're in the process of emptying out 20 years of stuff. Sooooo much stuff. An overwhelming task to say the least. Gotta be out by July 1st. OY! Well, wish us luck -- we're gonna need it.

Best Day So Far

2009-05-31T22:02:00.002-04:00

Well, it's been inching the right direction each day and today was the best so far.

We were released from the PICU on Thursday and came home to find my Mom (Bubbie) and Amelia's nurse, waiting outside for us. We loaded her out of the car, brought her upstairs and propped her up on pillows on her playmat in front of the TV for the rest of the day. Cranky and kvetchy, she just stayed there and watched episode after episode of all her favorites. Amelia was fed there and given her breathing treatments there -- all propped up like the Queen of Sheba!

Amelia has a new G-tube button called a Bard button and I'm still getting the hang of it. It's similar, but different enough from her old one to cause me stress -- the extensions and tubing are rubbery and it's not fun giving her medication thru them because I never feel like they're attached properly.

Nestor got a call Thursday late afternoon that his Manager had closed a deal for him and he was flying out to Miami on friday morning at 7am. Ummm...ok. So my Mom switched her plans and stayed here with me for the weekend into the beginning of the week. Thanks Mom! Always here whenever and wherever needed. We are very blessed!!!!
I think Nestor will be home tomorrow, so that's good -- cause I know Dad is missing Mom (awww!).

The first night home was pretty bad even tho I had given her 2 doses of Tylenol with Codeine throughout the night. The next night was a little better, last night better and well...I'm keeping my fingers crossed for tonight. We've been giving her Tylenol around the clock -- and no more codeine since the first night.

Today Jackie, my sis, El, my bro-in-law, Ezra,(4) their son and Maya,(almost 2) their daughter, visited us in the city. It was great. They came up on friday to go to an Anniversary party for old family friends of El's and stayed for the weekend up in his old neighborhood. So today they drove down and spent a few hours with us. Amelia was really happy to see her cousins. We had lunch and went to the park. It was Amelia's first time out since the surgery. It was a gorgeous day and she really enjoyed herself. I hadn't seen Amelia sit up so tall in her stroller in a week. It was great! They all left and of course, Amelia took a nice long nap. After, she got her breathing treatment and Bubbie and I took her back to the park before giving Amelia her first bath since the surgery (which she really seemed to enjoy)and dinner.

We're keeping her home tomorrow with the intention of sending her to school on Tuesday. Hopefully...

Pain, pain go away!!!!

2009-05-27T18:21:00.002-04:00

Well, surgeries were a success. All three docs reported that things went well. Amelia is in so much pain. We spent hours in Recovery and then were put up here in the PICU overnight. They were concerned about her respiratory system. She had some pretty heavy stuff coming out in the ER and I've been suctioning her more than I have in years -- of course, she keeps crying so that's not a huge mystery as to why!

The Opthamologist did a great job and was really happy about how it went. But it's very sad to see your child cry blood tears. Amelia has a big, swollen blood clot, in the inside corner of her right eye, both eyes are reddish and slightly crossed (this is normal and within a few weeks/months they should straighten out).

The ENT told us that he had thought the adenoids were blocking 90% of her nasal passage, but when he got in it was worse. He said it was growing into the back of her mouth. It was completely blocking her nasal drainage and on top of that, her tubes were either no longer in/not working, so there was tons of fluid and puss built up in her ears. Poor little thing!

Amelia now has a little button in her belly called a Bard Button, as opposed to the Mic-Key button. It's smaller and more flush to her skin, but it doesn't have a balloon to inflate to keep it in her stomach -- it's more of a hard plastic mushroom on the inside to keep it secure. The downside is, if something happens to it, we need to run to the ER to have it replaced (I can replace the Mic-Key myself) because the Bard has to be inserted through the esophagus (YUCK!). So that's a little worrisome. However, the chances of it coming out is less than the Mic-Key because it's a more secure device -- no chances of a balloon bursting. Oh well, just a month or two before they switch it back out for the Mic-Key.

So that's us. Thank God this day is over. Each day will help her heal and get back to being her happy self. Right now she's in a crib, in a room, shared by two other kids, watching Tigger and Pooh on our computer at her bedside. She's crying and fussing and giving me a heart attack every couple of minutes as she throws her arm with the IV around or tries to kick around, while they're finally giving her some Pedialyte in the new g-tube. Glad to see she's getting back to normal.

And a BIG thank You to Chai Lifeline for bringing us a delicious, hearty and appreciated dinner tonight at the PICU. We are so lucky that they are just a phone call away in times of need.

Waiting

2009-05-27T07:48:00.002-04:00

We're here. We met with the 3 docs doing Amelia's surgeries. I carried her into the ER. Sang "5 Little Speckled Frogs" as they put the mask over her little nose and mouth. She smiled up at me and then faded into sleep.

They have 3 hours allotted. Eyes are first, then ears and adenoids and lastly, close the existing g-tube site and create a new one. Each doc will find us here in the waiting room after they have completed their procedure.

Calgon take me away!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Farewell Memorial Day Weekend

2009-05-25T21:39:00.004-04:00

I always look forward to Memorial Day weekend. As a kid, it meant that school was almost over and summer was about to begin. Camp, swimming, staying up late...all the good stuff. As I became an adult, I looked forward to it because it meant a 3 day weekend -- and when you're working an office job -- that's awesome!!!! Then, when Nestor and I got married, we decided on Memorial Day weekend, so we could throw a huge, boogie down wedding for all our friends and family -- many of whom were out of towners.

But today, well...as Mom of Amelia, I'm sad it's over, because it means that her surgery is the day after tomorrow. I know she'll be fine. I know the procedures she's having done are "routine". I know she's a trooper and that she'll be so much better off in the long run to have all this done at one time -- and just to get it all taken care of so she can progress. But tonight, as I put my sweet little girl to bed, she looked up at me with those big, brown, trusting eyes and gave me the look. The look that only a little trusting child can give a parent. The look that says "I know you'll never let anything bad happen to me."

I lost it.

I'm going to walk into NYU on Wednesday morning at 6:15am and hand over my baby girl to 3 different surgeons so they can perform strabismus eye surgery (working on 3 muscles), replace her ear tubes (3rd set), remove her adnoise (her nasal passage is 90% blocked) and completely redo her g-tube site (sew up the existing site and punch another hole in her stomach). Yes, these are top surgeons. Yes, this is all routine stuff. Yes, children have amazing resilience.

But I feel awful ....and angry -- so f#@^&*g angry that she has to go through this. Amelia's come such a long way. I know her site can't stay the way it is -- the track (think of the shaft of an earring hole) has stretched and all this raw gooey skin is sitting just under her Mic-key button. It won't allow the button to sit flat and we have to put cut pads around the site to keep the milk and stomach acids from pouring out of it.

On top of all the obvious pain and recovery, the other big thing is that we have worked so hard to build up Amelia's stomach muscles to help her core to strengthen and now, they're going to cut through a whole new set of stomach muscles. She's been sitting up so well -- finally. Yesterday I was playing with her and she sat up for a solid 45 minutes -- completely unassisted and effortless.

I know it will all be fine. I'll vent to you guys and get over my anger (for the moment)...I'm having a "why her" kind of night. The important thing is to keep my eye on the "big picture" and jet through this so we can see our beautiful girl with straight eyes (hopefully), ear infection free who no longer snores so loud and can breathe better, dare I say -- through her nose and gets her g-tube feeds hassle free -- with the incredible added bonus for Mommy of NO MORE CAUTERIZING!!!! Too good to be true.

Keep us in your thoughts and dreams. I'll keep you posted.

Poor Little G-tube Site

2009-05-08T21:23:00.004-04:00

Our future little blogger!
This was actually taken at the Ronald McDonald House last fall -- I just love it tho!

Sooooo......we had to cancel Amelia's ear tube and strabismus surgery which was supposed to take place yesterday because our ENT felt uncomfortable at the the surgery clinic where they were going to do the procedures. It seems that last year they shut down their pediatric facility there and are no longer equipped for a pediatric emergency there. We are totally okay with this...but it's still gotta get done, so we're waiting to see what happens.

In the meantime, we took Amelia to the surgeon's office, Dr. Ginsburg out of NYU on Tuesday because we've been having such a headache with her g-tube site. I've been cauterizing it every other night and using steroid cream on it (shrinks the skin on the site) all for naught.

Dr. Ginsburg looked at her sore little belly and said:

"Yeah, you've done everything you could do. It's not your fault and we don't know why this happens, but we're gonna have to close up her existing site and make a new one".

Silence.

Horrified looks on our faces -- as if we just got kicked in the gut.

ME: "Isn't there ANYTHING else we can do?"

DR. G: "Nope"

ME: "But I was just bringing her in so you could fix it. Here. Not surgery!"

DR. G: "Sorry. You can go home and discuss it and get back to me."

ME: "Could we do the tubes and strabismus at the same time?"

And that my friends is our new little headache. And we are actually trying to see if there is anyway on God's green earth that we can do all the stuff at the same time. I'd hate to have to put her under twice in such a short span of time. Problem is her other 2 docs don't work out of NYU so we're trying to figure that out.

On a happy note, earlier that same day we attended a lovely luncheon that is given annually by UCP, NYC. The "Women Who Cares" luncheon is held every year at Cipriani's on 42nd Street. What an event. So many wonderful people there who have done so much for the community as well as so many who have personally touched our lives and helped us through some of our darkest hours in learning how to cope with Amelia's needs. Nestor was honored to present their new website www.mychildwithoutlimits.org which is a resource for parents and families dealing with the day to day needs and services of their special needs child. I always sit at the event and just cry with each person honored and video shown of our kids. Always the most striking is when they show the "then" and "now" pictures -- which shows the stark contrast between how our kids used to be treated -- filthy institutions with NO stimulation, food, clothing, or any human rights to speak of and today, with wonderful programs and people who take our children and their rights very seriously.

And we are winding down our week in Baltimore at my parent's house. It's my little cousin's Bat Mitzvah tomorrow, so we came down here yesterday to attend the weekend of events. How fun! I'm very excited that I will be wearing the very awesome Nicole Miller dress from Nestor's and my rehearsal dinner from when we got married. Never thought I'd fit into that again! Fits like a glove. YAY! So I'm preparing for a little dancing, drinking and merriment.

On a last note, I was very sad to attend the funeral for my cousin Alan's Father-in-law, Leonard Ponfield today. He had been very sick. It broke my heart to see Alan, his wife, Jodi and their two children, Jamie and Brian and all their Aunts/Sisters/Mothers/Fathers/Uncles/Cousins so bereaved. I just hope they felt all the love that everyone at the funeral was sending them to help them through this devastating time.

New Pics from Darmia, Auntie Donna and Uncle Shawn

2009-04-30T12:40:00.008-04:00

We've had a really busy few weeks. Amelia is well. Still transitioning into school. She's been spiking these high fevers at night, I give her tylenol and breathing treatments and it's gone by morning and she's not showing any signs of being sick. Completely acting like herself and laughing at my silly songs and her cartoons. I spoke to Amelia's Pediatrician about it and we both agree it must be neurologically based. Lots of times kids with neurological disorders have trouble with the brain controlling the body's temperature. So that's been tough, because it means we're up all night and then she is sleepy for school. Also, her G-tube site is still a mess and I've been having to cuaterize it every other night, with silver nitrate sticks, which is horrific. I know the granulation tissue (the tissue that grows out of a g-tube site, trying to heal the "wound" which is the hole the g-tube is placed into) isn't supposed to have any nerve endings in it...it's a crock! Amelia screams and cries bloody murder. It's literally torture. The only thing that keeps me doing it is the knowledge that if I burn all this stuff off and clean up the site, I'll be able to stop doing it one day -- hopefully soon. She recovers pretty quickly tho if we turn the right cartoon on.

Speaking of which...our young miss has become extraordinarily finicky over which cartoon episode is put on for her. So funny and at times irritating. Nestor and I have gotten into arguments over this because I'll say "Enough! We're teaching her obnoxious habits, that she can get her own way every time she puts her hand in the air" (this pointing technique she's developed means "CHANGE IT NOW!!!!", subtle) whereas, Nestor feels like this is the only place in her life where she has any control and we should honor this small request; "she doesn't get to choose what kind of food to eat, which clothes to wear, where she wants to go or have the voice to make demands of us...so let her have this small concession if it makes her happy." sigh. I have to agree with this arguement. However, lets just state right now that after watching the first 2 seconds of what-used-to-be-her-favorite Backyardigans episode, it's not so easy to just keep putting on one after the other. We went thru 9 in a row the other night before she finally gave in and allowed us the viewing pleasure for about 15 minutes before raising her hand in the air to demand the next viewing choice. I'll tell ya...four letters, D-I-V-A.

Here are some pics that were sent by Amelia's Aunt Donna today. They're from Darmia's birthday party (a few weeks ago I posted about Amelia's fun time there) and from Amelia's spring break when we met up in central park with Aunt Donna, Uncle Shawn, Darmia, their friend, Alex with his newly adopted, 3 legged pooch, Alice.

Amelia and Mommy painting Tinkerbell at Darmia's birthday party

Amelia making friends, as Mommy finishes the project

Amelia napping next to Daddy, while Alex rubs Alice's belly

Daddy enjoying the day -- with a very fancy cup holder!

Uncle Shawn and Mommy listening intently to someone saying very important things!

Clearly, these photos were taken by Auntie Donna with help by her assistant, Darmia -- which is why they aren't featured. We promise to include them next time!

Try doing this in Grand Central!

2009-04-22T21:32:00.003-04:00

I promise to update soon, but my friend Jodi posted this to her blog and it made me so happy. I had to share it with all of you. Enjoy!

A Milestone to Note

2009-04-06T16:59:00.004-04:00

Amelia at school

This weekend we went to our friend, Darmia's 4th Birthday party(daughter of dear friends, Donna and Shawn). We've been attending Darmia's Birthday parties for the past 3 years and it is always with lots of tears and drama (Amelia's, not Nestor's) that we make it though a dreaded hour.

Well, my friends, Amelia is now 3. She goes to school. And now...she attends Birthday parties!!! That's right. We were there for over an hour and Amelia was so into it. She didn't cry, fuss or scream at me. The kids were doing plaster craft (SO FUN!) so I picked out a "Tinkerbell" plaster craft and pushed her stroller up to the very long table where everyone was painting. She was happy as pie to be sitting amongst the kids with a smock on. I started painting the piece -- thinking she would just watch...but out came her little hand for the paint brush. So, hand over hand, we painted Tinkerbell. It was really awesome! And it looks even lovelier;)

There was pizza and cake. Again, at the long table with all the kids, Amelia tasted the whipped buttercream frosting. Then, there was music and dancing. Amelia started to complain then, so I took her out of the stroller and walked her over to where the other kids were doing the "Chicken Dance". It must be that Latin blood, because our girl was so happy to be up and dancing (oh, my aching back tho!) -- but the complaining stopped and she was into it!!!

We left at about the 1-1.5 hour mark. We collected Amelia's plaster craft and headed out. What a great party and a real milestone for The Serrano's.

This weekend we're going down to Baltimore for Passover AND another Birthday party! Our little cousin Austin turns 1. Amelia is such a party animal!!!!

A Quick Update

2009-04-03T12:44:00.002-04:00

In a nutshell....

Amelia stayed home Monday, went to school Tuesday, spiked a fever Tuesday nite, stayed home Wednesday and Thursday and is in school today (Friday). We started her on heavy duty antibiotics on Wed. and her ENT upped her Zyrtec dosage 50% when we went there yesterday for an appt. This morning she woke up soooo clear. I couldn't hear her breathing -- and I can always hear her breathing. She looked so comfortable. Unfortunately, it's only for 7 days and then we put her back to the old the dosage. At least she'll get thru this cold better and we know in the future that's an option to dry her up.

It looks like Amelia will be getting the strabismus (eyes) and tube (ear) surgery on May 7th. The tubes we've done twice -- no big deal -- and the strabismus...well, we have a fantastic eye surgeon (Yes Dad, you're the best eye surgeon..but we need pediatric, ok?) and he told us getting the eye surgery is like getting the tubes done. Takes 5 minutes and no big thing, so....there we are! I'm excited to see her eyes look directly at me, straight on. It'll be good to get that taken care of.

Amelia has been making all kinds of incredible sounds and gestures. She is soooo vocal. She'll look directly into your eyes and talk to you. I just wish I had a book called "Amelia Speak" which could interpret each sound. Also, she is now making big demands on us to turn on the TV, in which she points at the TV and yells at us. And heaven forbid you put on the wrong program...that arm goes right up again and she will howl until you put something else on...and heaven forbid that's wrong...you get the idea. We love it all. Although we have created a bit of a monster. However, I would prefer she make her preferences known. Such a fine line between encouraging communication and creating a spoiled child who gets everything she wants when she wants it. What to do, what to do? At this point we've been encouraging it -- anyone have an opinion? I'm not kidding, we can go thru 7-8 episodes of her favorite cartoon until we reach an acceptable choice. We live in fear of that arm going up and pointing at the TV.

Busy weekend ahead of us. A friend's birthday party and hoping to see Nestor's sister and family too. Then we go to Baltimore for Passover next week, where we have more birthday parties and family stuff planned. It never slows down...just the way I like it!!!

Ever feel like you've been hit by a mack truck???

2009-03-28T09:12:00.004-04:00

It's Saturday morning. I've been up with Amelia all night long. She's sick...big surprise. That's protocol for kids when they start school, right? She has tons and tons of secretions. I've been suctioning and wiping nonstop since around 4pm yesterday.

But let's backup. Wednesday Amelia started school. It was very exciting. Nestor and I drove her to and fro this week...looks like that'll be happening next week too, until they get the paperwork finished and her nurse in school can ride the bus with her. They're different contracts for the nursing agency -- the Dept. of Transportation (DOT) versus the Dept. of Education (DOE), yadda, yadda, yadda.

So, when we walked into the lobby of the bldg. with Amelia, all these women were getting off the elevator with strollers to bring up the arriving children from the buses. They all saw us (about 8-10 ) and rushed up to us cheering "Oh my God, is this Amelia?"and so on. That was it. I wanted to take her stroller and run the other direction...but I didn't. I just got very filled up and thru a clenched smile -- holding back a floodgate -- I squeaked out a very weak "yes." I was so emotional and I didn't think I'd be, because I am, truly, so excited for her to start school.

Also there was her new nurse at school, Toni. She's a sturdy, young woman with lots of personality and smarts -- thank goodness. She seems to really get it. Amelia will be sharing Toni with another little boy in her class. He is so cute! What a handful the two of them are. But there are only 7 children in the class (uh, eh-hem...Miss Amelia is the only girl -- what a Princess-- by the way, that's what Toni calls her) with a teacher, two assistants, another child with a one-to-one, another child with a nurse and Amelia and the little boy with Toni. Lots of extra hands around to help out!

Amelia's nurses, Keisha and Lia came with her this week just to get her adjusted and train Toni in Amelia's routine. Toni did great and I feel confident that she'll do great next week when Amelia is all hers. I was there somewhat, but got kicked out each day by them to go to the gym and let them situate Amelia without Mommy being too close by:( Overall, Amelia did really well this week. They did lots of circle time and books. She had Speech, Occupational and Physical Therapy in school this week and all her therapists seem knowledgable and terrific -- with lots of exciting ideas and goals for Amelia. She did fall asleep each day at school, which is fine, as she transitions into her new schedule. Not much napping after school, but definitely having a wierd time adjusting to her new life. She'll get it, I have faith -- but of course, I know now...that she has also been getting sick the last day or so.

So, yesterday morning I noticed she had a lot of stuff coming out of her nose, but blamed it on allergies. Not so. After school was a whole other animal. Keisha tried to take her out and she had a total meltdown. So she brought Amelia home and we put her into her crib, where she fell asleep for a little while. When she woke up, it was like the floodgates had opened and her nose hasn't stopped running and the coughing and sneezing has been endless. So I'm hoping that she gets it out of her system and will be better by tomorrow so she can go to school Monday. Oh well, I guess this is the life.

Also, on another exciting note, Amelia has 20 Res. Hab. hours a week thru her Medicaid waiver, which we have never been able to fill -- could never find the right person and yesterday...we did! So wonderful. This woman, Jossette, came over with our MSC, Karen from UCP and we fell in love with her. Jossette is smart, she works within the special needs community at YAI in Brooklyn (Amelia's school Roosevelt is also YAI) and wants all the hours. Even with Amelia waking up a miserable little monkey yesterday, she wants all the hours -- YAY! So, the paperwork needs to be done and then Amelia will have new friend here every week. We're very lucky.

And to round it up -- Nestor came home on last Saturday and it was great to have him back. It's been a really hectic/stressful week, so we haven't really had any real time to "take in" each other being around...but we will.

So everyone please send healthy thoughts our way.

Also, wanted to note...Happy 1st Birthday Sebastian. Sorry we'll miss your party today. Peanut butter and jelly sandwiches with cake and ice cream sounds scrumptious! I also think your Mommy, Veronica is really cool. Food for thought: Veronica sent out invites keeping the party on the DL and letting friends know that it's cool to come without a new gift. She asked for recycled toys if you had them. I think in the spirit of today's economy -- that was such a classy move by you! Thanks for being so thoughtful.

Wednesday it is

2009-03-21T11:31:00.004-04:00

Allan & Amelia -- action shot
And yes, I cut her hair this week

Yep. The paperwork has been signed and Amelia will officially start school Wednesday. And not a moment too soon.

Her Speech Therapist, Keisha said to me yesterday when she got here "I have some bad news..." and I said "Stop. Stop there...Amelia is starting school Wednesday." To which she replied "Oh, thank goodness because another feeding case came up and blah, blah, blah..." You get the point.

Also, as I sit here blogging, Allan, Amelia's PT is doing his very last session with her:(( So sad! We're going to miss his sweet smile when he walks through the door twice a week -- which makes Amelia light up and laugh too. Happy trails Allan! Those lucky kids in Florida.

So it's crunch time as we transition into school. I am still looking for a Speech Pathologist and Occupational Therapist to come to the house after school hours, 2x60 (just putting it out there for anyone reading...perhaps has some ideas...hint, hint!). Other than that, we have almost everything in place. Except I still have to label everything -- clothes, bookbag, feeding pump, suctioning unit, medical supplies...you know, the normal stuff for school. Tick tock, tick tock!

And on a very happy note, Nestor is finally coming home tonight after being in LA for almost 2 months. It will be great to have him back -- even grumpy and jet lagged. YAY for Amelia and me!

Out of Town

2009-03-13T21:27:00.003-04:00

Amelia and I have taken a little trip to Baltimore to visit the family. We've been in the city without Nestor for about a month and a half, so my Mom came up Tuesday and we drove down to MD on Wednesday. It's been really nice to be around the family and all the tumult that comes with it. My sister's kids are bursting with energy and they both love Amelia a lot. It's really great for her to be a part of that. I don't want to brag either, but my little niece, Maya, learned to say my name yesterday (without the "Aunt" part -- she's not even 2 yet...she'll get it eventually) and has not stopped saying it. No matter where I am there's her precious little sing-song voice saying "Deb-bie", to which I reply "Ma-ya" and she smiles the biggest smile I've ever seen and says back "HI" with a wave. So sweet. I'm not sure what Amelia's take on all this love and interaction is, but she's somewhat competitive with Maya, so I'm hoping it'll spawn a little communication somehow. We'll see.

We're still working on getting her into school ASAP. We've gotten all the paperwork from our Dr. in to the Board of Ed and now it's just waiting to see what they decide in their assessment for nursing. We already know they have to approve it. The school nurse at Roosevelt has out right told me that Amelia's care is too much for her to do herself and she will definitely need a nurse to vent her g-tube and hook up all her feedings, along with any nebulizer treatments she may need during the day and so on. It's all just a wait and see game now.

On top of everything else, I got a questionnaire for Jury Duty in Orange County (that's where our house is, even though we live full time in NYC because of Amelia's needs). Unbelievable! So I had to call her Pediatrician and get her to do a letter for me explaining that I'm a full time caregiver to a child with special needs. When it rains, it pours, I guess.

The Tired Twinkie Defense

2009-03-03T18:40:00.003-05:00

I had lunch with my girlfriend, Veronica today and she told me a great story. Her cousin, Katie is the Mother of four under 5 years old, with the youngest at 16 months. As you can imagine, she's exhausted all the time. Sounds familiar, right? Katie's husband is one of those egocentric physicians who thinks he is a God and she is a nurse.

So, her 4 year had been pretty sick, but it was the baby (16 months) who got really sick and they took him to the hospital. His glands were really swollen so they did a battery of tests. When the blood work came back, the baby tested positive for mono. Uhhhh...mono? How the....

Then they tested the older son (4 yr.old) and he tested positive for mono.

So Katie, decided she should probably be tested and guess what people? Yes, Mom had mono -- for three months. Katie was vindicated -- she's not a terrible, neglectful Mother-- but exhausted to the point of: the baby's crying and she cannot get out of bed and just wants to check into a hotel room and sleep for a week. Turns out, she's been carrying this around (unfortunately gave it to her kids) and now knew why. Her friends had told her she was depressed. The husband thought she was just getting off easy and shirking her responsibilities.

So, the moral of this story is...I think we should all get tested for mono -- that's why we've all been so tired and irritable since we had kids!

FYI: The bonehead husband's reaction to finding out the reason his wife had not been herself all these months was "Well, I hope I didn't get it. Maybe I should get tested." OH PLEASE! Get over your bad self!!!!

Ch-ch-ch-changes

2009-02-26T18:38:00.012-05:00

There are so many things happening these days.

Photo by Tina Guiomar

Nestor is still in LA. Making the best of a slow pilot season.

Amelia is moving closer and closer to beginning school. We are putting the finishing touches on her paperwork. As it turns out, rather than getting into a long drawn out fight with the Board of Education over providing a nurse for Amelia during the school day, her new school, Roosevelt, stepped up. As it turns out, there is a little boy, similar to Amelia -- g-tube fed, suctioning, nebulizer treatments, etc. His family is going through the same process as us. They are neck in neck to start school. Roosevelt looked into their budget and decided that they are going to hire an LPN for Amelia and this other boy. The two will be in the same classroom of 6 children and the LPN will be there just for the two of them. It's like having a huge gift put right into my lap. Now we just have to get her busing and after school therapies in place and we're good to go -- just about.

I'm having issues with the insurance company now. because we won't be using 40 hours a week of nursing, they are essentially telling me that old addage "if you don't use it, you lose it." So now they're doing another medical review to try and reaccess Amelia's need to have her nursing in place, regardless of whether we use it each week or not. There are going to be days that Amelia will be home sick...and chances are I'll have been up with her all night -- if Nestor's out of town -- that's not a good recipe. There are always tons of doctor's appointments to go to and i will need help with those too. I keep trying to explain that because of Amelia's $2 million lifetime cap on her insurance, we've been looking forward to school so that we can cut back on nursing to try and save the less than $850,000. we have left until she's 18 years old. Most of her specialists don't take Medicaid, so when she exhausts her primary insurance and the Medicaid kicks in, we're going to have to find all new specialists (Neurologist, Pulminologist, Opthomalogist, ENT, Pediatrician, GI, Surgeon and more). Anyway, we have really compassionate Case Managers on it, whom I have good relationships with.

That's Lia holding Amelia at her Birthday party this year, in front of Lia is her son, Everton playing with a balloon. Smiling at her is the lovely Keisha, Amelia's other nurse who will be with us until "we tell her to not to be".

And lastly, the saddest part, it was Lia's last day with us today. She's been with us for over a year and she is the one person, in the world, who would come in here 3 days a week and meticulously take care of Amelia. She calls Amelia "her baby from another mother." Lia would call the next day if Amelia had been sick the day before...or if we even suspected she might be coming down with something. She was the one that Amelia would turn to, with arms up, to save her when therapy got too hard or she just wanted to cry or be held. Lia was a master at restocking the supplies, thoroughly cleaning and rinsing them. She knows each and every sound, noise, sneeze, wheeze and cough Amelia makes. Lia was with us each time we made the trek to Long Island for therapy and help out in every way possible. She knew Amelia's schedule completely and was always on top of when, how and where a feeding, therapy or diaper change took place. Lia came in each day with a big smile on her face and a million stories about her crazy kids and co-workers at the hospital where she worked when she wasn't here. When we told her Amelia was going to go to school she was so happy for her, but knew she would soon be having to find another case. Instead, a position at her hospital opened up and because we thought Amelia would be beginning school the first week in March and this position started the first week in March -- she thought the timing would be perfect. We had no idea that we would have the delays we've had because of the in-school nursing situation. I am so happy for Lia that she is off to this good position. She's always talked about going back to school and this would be the perfect opportunity for her (when you're full time at a hospital they'll usually pay to send you back to school). But I am so sad for us. There was a real comfort in knowing I would see her 3 days a week. We have promised to keep in close touch (she's a friend on FB) but it's always different. The end of an era for us. I am so grateful to have had her for the year, she will never know how much.

Lemonade Award

2009-02-21T22:05:00.003-05:00

Just received the Lemonade Award from Ellen over at "To The Max".

Thank you Ellen. I am honored.

She bestowed this award upon me for the following:

"I hereby bequeath this to the following bloggers, who have an amazingly optimistic attitude and a whole lot of spirit."

I will try not to disappoint.

Addicted

2009-02-19T20:03:00.002-05:00

I took the plunge yesterday and joined FACEBOOK. I have been obsessed since. I've reconnected with so many old friends from high school, college, etc. I even found a group for the theater camp I went to when I was 16. A few friends have been messaging me constantly and posted some photos of us from when we were 13. SO FUN! I can barely tear myself away from the computer to go the gym for an hour -- but I have been because I'm also a little obsessed with my daily 6 mile runs. I feel out of balance -- but that could be because I donated blood yesterday and went out for an early happy hour this evening.

Anyway, the really good news is that tomorrow AM, we're getting our new wall-to-wall carpet. Tonight I have to lay down the matting that goes under it (from Wal-Mart -- good stuff). I can't wait to get back to our morning routine of walking around the apt. I've been doing some, but this will give me a safer feeling to go wherever I want with Amelia safely.

She's been doing really well this week. Lots of "Give me's" (sign language) for everything. Lots of laughing and reacting to people, TV, letting me know when she's had it, etc. We started therapeutic feedings again. Her new Speech Pathologist, Keisha is working on getting her to strip the spoon and she picked it up really quickly. We've always given her food on the underside of the spoon. What Keisha does is put the food on the spoon normally, puts the spoon in and closes her lips around it by closing her jaw with a finger under her chin. Genius! Makes perfect sense. Amelia's really has responded to it and is picking up on. Tomorrow Keisha and I are going to the Lending Library at UCP to get some Augmentative Communication Devices for her to use. It should be a very cool intro for Amelia.

Gearing up for the Oscars. I know I'll never stay awake for it. Nestor's still in LA. We usually go out and get lots of good eats & drinks and gorge ourselves. Oh well, probably better to not do that this year anyway. Did I mention that I've now lost 25lbs?

Dancing Queen

2009-02-13T18:32:00.003-05:00

Amelia is doing much better. Her tongue is still slit, it has a coating over it. She has tons of secretions draining out but and I'm now able to brush her teeth again -- gently! I'd say Amelia's up to her old tricks. Just this morning I caught this footage on my cellphone.

See for yourself.

HEALING & WALL TO WALL CARPET

2009-02-06T11:33:00.004-05:00

Well, we're on the mend -- both Amelia and Mommy. Her tongue has a white film (like a skin) over the ripped open area (so painful looking) which, I guess, is the body's way of healing itself.

And I, well, I am healing too. I'm cutting myself a little slack. I still haven't walked her to her chair for breakfast, and I'm not walking her by the hips for awhile (which is where I was holding her when she fell) but by under the arms -- which is a lot of support, but oh well! That's where I am right now.

I just finished an appt for a free in home estimate from Empire Carpet -- found a lovely frisse' carpet with lots of golden/copper/brown tones and am meeting with another guy from Popular Carpet in a half hour. We're going to lay down more of the matting we got from Wal-mart (really good interlocking stuff for about $24.00 per 6 pack) and put carpeting on top.

My folks are coming up to NYC tomorrow for the weekend, which will be really nice.

And the terrible Mother of the year award goes to.....

2009-02-03T18:05:00.003-05:00

I'm not feeling too wonderful at the moment. Amelia and I woke up this morning...like any other morning. I walked her to her stander, gave her her breathing treatment while she watched cartoons, walked her back to the crib and got her ready for her breakfast feeding. And as I always do, I began to walk her to her feeding chair. But this morning, she wiggled and wriggled and lunged away from me and fell onto the tile floor smashing her mouth into the floor. There was so much blood. I was freaking out. I didn't know what to do. I called my Mom -- crying and yelling into the phone that Amelia fell on her face and she was crying and bleeding a ton. My Mom was so calm and cool (years of experience) and told me to dial 911. I called 911 and the extremely nice woman on the phone got all my info and told me help was on the way. Meanwhile, I put Amelia into her chair, put her cartoons on which calmed her down somewhat and got a clean towel to look closer at her. Her tongue was sliced apart about a quarter inch on the right side, in a cane shape. So horrible and bled sooooo much. I got a buzz at the door and it was two police officers from the 6th Precinct downstairs and our landlord, Bruce . I'm crying uncontrollably and running around like a madwoman trying to put together her tubing and extensions in the diaper bag, along with fresh clothes that aren't blood soaked. It turns out that one of the officers installed Amelia's car seat for us in the Lexus. They were all so incredibly kind, helpful and wonderful.

The EMS arrived and everyone helped us out to the ambulance. EMS asked which hospital we wanted to go to, so I told them NYU because all Amelia's docs are there. So that's where we went. I called Lia, Amelia's nurse, to tell her to meet me there instead of the apt. When we got to the ER they took us back very quickly.

The doctors looked at her and told me that they don't do stitches unless the tongue is completely sliced in half or if there's an artery involved. The bleeding had pretty much stopped by then and she fell asleep. so they wrote me a prescription for Amoxicillon (to stop any infections in the wound) and sent us home.

As an aside, I have to mention that I was asked, about 10-15 times, what happened? As I explained, "Well, I was walking Amelia from her crib to her feeding chair, like I do every morning-" "Is she ambulatory?" asked the ______. " "Well no" I responded, but it's carry over of therapy. We walk or crawl her, so she gets the sense that she isn't being carried everywhere-" "I see" says _______, with a look of skepticism on their face (actually, it's probably not skepticism, but I'm feeling so guilty, I think it must be). And I started thinking to myself "Oh my god. Are these people going to hold me accountable for this? Could I get into serious trouble for this? Could they take Amelia from me? Maybe I shouldn't be so honest about what happened..." and so on. How awful that we live in a world today, where on top of all the other things we have to deal with, this line of thought came barreling through my brain at a time where all I wanted was to hold my baby girl and take all the pain away.

Everyone has told me that "it looks worse than it is" (and it looks SO bad and SO painful, trust me) and "don't beat yourself up, this is what kids do" or "these things happen" and I appreciate the sentiments, but I had her. I really had her and it happened so fast. Every time something like this happens it sets us back so much further.

I have been thinking a lot lately about how far Amelia is from eating. Actual eating...and speaking. We are really no closer today than we were a year ago, two years ago. She's three. She fatigues after 3 swallows of less than half a spoonful of thickened baby food. She doesn't say one audible word or babble on her own. We dealt with not having a speech therapist for four months, heavy-duty pneumonia and now this. Again we are in the "no feeding" zone. It sucks.

TIME Magazine Article: Stem Cell Research

2009-01-31T13:27:00.005-05:00

A very exciting article from Time Magazine. Gives all of us hope that one day soon we will be able to help our kids reach their ultimate potential. Keep on keepin on!!!!!!

Find this article at:http://www.time.com/time/health/article/0,8599,1874717,00.html

A Birthday Miracle

2009-01-28T10:13:00.002-05:00

An action shot of opening gifts.
That's me holding up a ""Birthday Girl" shirt my folks got her.
Nestor is helping Amelia stand, Sarah is to my left, my sister,
Jackie is next to her and Ezra, my nephew is sitting in front of her.
On the right is Donna with daughter, Darmia.
This is after most of our guests had left -- it was crazy!!!!

Well, we did it. We had 30 people in our little apt and it wasn't so bad. As a matter of fact, I'd say everyone had a pretty terrific time. The kids stayed to the black rubber playmat aka "the mosh pit", where all the toys were strewn, which was perfect. Kids played, kids napped...at one point we had 3 kids napping in the bedroom during the party (Amelia in her crib, cousin Andrew and g-dsister, Darmia on the bed -- hidden in the coats) -- what a crew. My parents, Nestor's sis w/ family, Aunt Andi (my Dad's sis), sister and nephew, cousins w/ kids and our friends & kids came to feast on tons of pizza and ice cream cake.

Amelia got lots of beautiful gifts. Lots to wear when she begins school (we're shooting for March 2nd), including a Tinkerbell backpack to match her new Tinkerbell AFO's (leg braces). So cute! How well coordinated. She also recieved a gorgeous enamel bracelet from her Titi Terry and Uncle Artie -- which is the perfect compliment to her pearl and crystal necklace. What a Princess!

Nestor left for LA on Monday, so it's just me and the girl for awhile. He goes out every year at this time for pilot season (Networks greenlight their shows for next year and actors flock to Hollywood to audition for them) so keep your fingers and toes crossed for us.

Yesterday was fun. My Aunt Andi and cousins came up to NYC to go clothing shopping for my little cousin's Bat Mitzvah in May. I met them for lunch and we spent the rest of the day together. It was really nice afternoon. I haven't done a girl afternoon in so long -- it felt like a real break, especially after running around all last week trying to get everything in order for the party and school, etc. I had two glasses of Chardonnay at lunch! When's the last time I drank like that -- let alone at lunch???

Last night was Amelia's Speech Pathologist's last session with her. We're soooo lucky because his supervisor, Keisha, is going to be sliding into 3 out of 5 of his weekly sessions for us until we transition her into school. Thank you to the therapy gods!

Birthday Madness

2009-01-21T14:39:00.003-05:00

Amelia turns 3 on Saturday. I can hardly believe it. Time has flown. Nestor and I are having a gathering of family and a few friends with kids. It will be chaos as we are expecting 34 people in our little one bedroom 725 (?) sq. ft. apt. Thankfully our landlord has given us access to a vacant apt upstairs to put some of our stuff into for the afternoon (stroller, some toys, etc.). My parents, sister with nephew, cousins (married w/ 2 kids) and Aunt are all schlepping up here for the toddler party. It's so sweet and we really appreciate all the effort they're putting out to get here. Nestor's family will be here too and it looks like even Spike, Mr. Collegiate himself may make it (and he's studying non-stop for his MCAT's, so we really appreciate the effort). It's crazy.

Tomorrow is Amelia's IEP meeting. That's the meeting where we sit down with Amelia's service coordinator, Tamara and her new CPSE Administrator, Alice with all the evaluations that were just done, doctor's "letters of necessity", etc. and figure out a mandate for her for the next 3 years. I'm pretty nervous about getting everything for Amelia that she needs. All her therapies -- in and out of school will be decided here, so we have to be really clear and concise about what we want. Alice seems to be lovely, I spoke to her briefly on the phone, so I expect it will go well. I'll let you know.

We decided last week that we will be extending Amelia's EI services. With everything that has to happen before she goes to school, there would be a lapse in services. Even though she won't be getting Speech, our PT has extended his time in NYC for another month, so she will be getting all of her PT, 2/5 of her OT and all of her special instruction. Better than just lying around for a few weeks while we get everything in order. We can pull Amelia out of EI anytime and put her into school then.

Yesterday we went back to UCP for Amelia's 2nd fitting of her replacement braces. They look great. We chose "Tinkerbell" as the fabric on the braces and it looks really cute! Getting the braces fitted is like having a wedding dress fitting. You keep having to go back for them to tweak it. Anyway, we get the completed pair on Monday morning --YAY! Also, we ordered a new stander for Amelia from a picture I found online. It looked so petite and utilitarian -- no bells and whistles, just a simple place to stand up. WRONG! Michelle,PT at UCP ordered this monstrosity for us and....WOW...forget it. I couldn't put Amelia into by myself and it was HUGE! It was really wide, no castor's to move her around and she hated it the moment we finally got her into it. It was not user friendly and I was really upset that I had put Michelle through all the trouble to order it. She was, as ever, gracious about it and even lent us her Gecko stander which Amelia is doing great in. It's low to the ground (her Rifton stander was high off the ground) so I'm hoping we can put her in it a little during her birthday party so she can play with her little friends at their level. We were also supposed to get a Rifton gait trainer (like a walker) to borrow, but the one that the supplier brought was sized for a young adult -- I think it was actually bigger than our apt! Forget that. We don't really have much use for a gait trainer until the warmer weather anyway because there's no room in the apt. to move around much in it (it's fun to take to the park or up to the house), so we'll get another loaner in spring.

On a personal note, I've lost 17 pounds. I'm getting to the gym 4-6 times a week and really counting calories. It seems to be working and I'm making smarter choices and really not hungry, so that's great! I'm just measuring everything out and keeping it healthy. I went to the Gap the other day to replace the one pair of jeans I had that fit, that were in our stolen suitcase and guess what? Size 8! Truly and I can even breathe in them. I'm very motivated to keep it going -- I'm beginning to feel and look like me again and that's all I need to stay on track.

It looks like Nestor will be heading out to LA next week for pilot season (when all the Network's greenlight their new shows for next season and actor's flock to Hollywood to audition for them), so Amelia and I will be flying solo for awhile.

A shout out to Jodi for kicking my butt to update this blog. I've been a little hectic, but love getting our updates out there. Thanks for the shove!!!!!

Oh, My Spinning Head

2009-01-11T09:22:00.003-05:00

Photo by Tina Guiomar

We've had such a crazy couple of weeks and every time I sit down to update the blog something comes up. We had a wonderful Christmas and Chanukah with our families. Tons of lovely food, drinks, laughs and, of course , gifts. When we came home from Balto after the holidays, our suitcase was stolen while unloading the car. Amelia's AFO's (leg braces)were in there and our laptop -- plus the only clothes that actually fit me (finally really working on losing weight) and all my makeup, bras, etc. Sucks! So there's been lots of running around replacing things -- including taking Amelia to clinic to get casts done for her new AFO's. So we've been dealing with police reports, insurance co.'s, etc. Neverending! Trying to find receipts for things, talking to Amelia's medicaid service coordinator to find out if Medicaid will even pay for another pair ($2,500!). My head is swimming.

In addition, we had to take Amelia to get her evaluated for CPSE (Preschool) this week which was exciting, exhausting, so on a so forth. Even though Amelia ages out of EI (Early Intervention for kids 0-3 yrs. old) because she has a January birthday, we have the option of extending services until September of 09. This has been our intention from the start because of Amelia's fragile immune system -- wanted to give her the extra time to be that much stronger. The first day of evaluations, Tamara, Amelia's Service Coordinator for EI arrived and promptly told me that John, Amelia's Speech Therapist -- who took 4 months to find to replace her ST who left in early August and has only been with us a couple of months -- is resigning from his NYC cases on January 27th! OY. We are also losing our PT the end of this month and have yet to replace her OT who left in October. So unless we are able to replace these therapists quickly, Amelia will be receiving less than half of her mandate. Realistically, not going to happen. We have had such a horrible time trying to find the few therapists we could. So with lots of anxiety and many conversations with Nestor, Tamara, other Moms, Roosevelt's Director (the school we're sending her to, and yes, they have availability for her on January 26th) we have decided to send Amelia to school in TWO WEEKS!!!!! I am so overwhelmed, nervous, terrified, excited, giddy,etc. I'm so not ready to send her this quickly. There are many meetings that have to take place before her birthday on Jan. 24th. We have to have her 6 month eval for EI, then a IEP meeting with CPSE to put together a mandate for her. Meanwhile, I have to get letters of necessity from our Pediatrician so we can get Amelia a nurse in school -- to keep her airways clear as she is at great risk for aspiration still and we just got out of the hospital 3 weeks ago, also to get her the maximum amount of therapies we can while she's in school and some after school. And I called our nursing agency to tell them. No idea what's going to happen with our nurses. One of our nurses, Keisha, is open to going to school with Amelia, but Lia, her other nurse -- I don't see it happening. She's been on jury duty since last week so I haven't even been able to speak to her about it. So much stuff to do in such a short amount of time. Can we actually get it all done?

The Boulevard -- All About Amelia article

2008-12-15T16:32:00.002-05:00

Quick update: had a terrible night last night. Fever at 103 all night. Almost went to the ER because of wheezing and high respirations at 4:30am, but she settled down and went back to sleep somewhat comfortably. Of course she woke up every 10 minutes with a cough or sneeze -- but we made it through the night and was able to take her to her pediatrician (civilized) this AM.

We were sent to NYU for a chest x-ray. It showed that her left lung is doing better, but her right lung is still looking not-so-good, so they changed her antibiotic and put her on Prednisone (steroid). Hopefully this will kick it! She seems playful but very pooped out. Cancelled all her therapy except for her teacher today. Figured she could use a little stimulation that wouldn't excert any major energy on her part.

This fall, The Boulevard (a society magazine based out of Long Island), came to our house upstate and did an article on Nestor and his work, play, past and present, life with Amelia and I. We just got the hard copy in the mail today. It really is such a well written, folksy article and I was able to find the online link.

http://www.boulevardli.com/DEC_08_09_Profiles/The_Boulevard_Profiles_Dec_08/Nestor_Serrano.html

Home & Exhausted

2008-12-12T21:24:00.003-05:00

Well, Amelia pulled thru last night like a trooper and we were released at noon today. Our perky nurse Jessica pushed things right along and we were out of there. She'll be on 2 heavy duty antibiotics for 10 days -- one for bacterial pneumonia and one for aspiration pneumonia, as we're not sure which one she has and lots of breathing treatments.

No one likes to be in the hospital, but for a Mom of a medically fragile special needs kid, as far as supplies go -- it's kind of like Disneyworld. Stay with me here. When we're home, I spend tons of time each day keeping syringes, extensions, venting tubes and bedding clean with vineager and water/soap, etc. At the hospital, I'm constantly amazed at at the blase' attitude nurses and doctors have about equipment and supplies. Everything gets thrown out -- even if it's just opened and not even used. And nurses are usually all too happy to share the wealth. I felt like a kid in a candy store as we were leaving and Jessica asked "is there anything else I can get you?" I said "We-e-e-e-l-l-l-l..." I know I sound like a kook -- but I brought home tons of syringes, new bulb syringes, vials of sterilized water (great for giving flushes -- for the GT -- while travelling), etc.

When we got home I put Amelia on the playmat and I am telling you, if she had a jet pack -- she would have rocketed to the moon. She was on fire. Into everything and crawling all over the place. We were so relieved to see her playing. Her teacher, Carol came by to do a therapy session -- not expecting much, and couldn't believe how attentive and motivated Amelia was to play. She stopped at 45 minutes becasue Amelia was clearly losing steam. But man oh man, if you had seen her two days ago, you wouldn't have believed that she would have been able to sit and play with toys today.

Anyway, we're all unpacked and settled. I haven't really slept in about 5 days, so I'm enjoying a vodaka beverage that my husband concocted for me. Sleep tight all!

I take it back

2008-12-11T11:06:00.002-05:00

...she was on oxygen all night. First by mask, then by blow-by. Oh well. She's off it now. If we have a good night tonite we get to go home tomorrow. Keep your fingers and toes crossed!

Yuck!

2008-12-10T22:37:00.003-05:00

I am writing from Schneider's Hospital in Long Island. We came out here for the week to do Therapies 4 Kids for just the week and Amelia got pneumonia. It started Sunday night right after we settled in for the night at the Ronald McDonald House. We had our first HBOT dive scheduled for Monday morning at 7am and then on to T4K's for 4 hrs and then back to HBOT for dive #2. We made it in for 2 hrs of PT and our afternoon dive. That night Amelia seemed fine and Tuesday we did our early morning dive and 4 hrs of PT. She did great, but her ears were really red, so we didn't do our afternoon dive. That night her fever spiked and this morning her fever was gone and she seemed good so we took her in for a couple hours of light therapy. Well, she could barely keep her head up. Her respirations went way up and we took her home to give her a breathing treatment. After the treatment Amelia's breathing was still so bad and she was burning up, so at our NYC Peds. advice, we took her to Schneider's Children's Hospital, where we spent 6 hrs in a room in the ER, where they took her for a chest x-ray and discovered that she has pneumonia in both lungs. They were started an antibiotic IV and admitted us to a room upstairs. So here I sit. I have a very pooped little girl, who is very angry about the splint on her arm keeping her from moving too much -- so as to save the IV -- which took 4 sticks (pricks) to get. What an awful thing to watch as three people -- drs. and nurses stand around trying to get a little needle into a tiny vein. The cries and howls are pretty unnerving.

The really good news is that Amelia is so strong now that we didn't need to give her oxygen or suction her -- which tells us how strong she's gotten. So that's the upside of this experience. Sucks that we're here, but good to see how different this visit is than the last one -- which was just about 2 years ago exactly.

Girlfight

2008-11-29T21:07:00.002-05:00

Hope everyone is having a long, wonderful Thanksgiving weekend. We definitely are. We started in NJ at Nestor's sis's house. It was an intimate gathering of his sister, Evelyn, brother-in-law, Carlo, Titi (Aunt) Luz, Grandma, Karena (niece) w/ bo, Jonathan, Spike w/ gal, Christina, Nestor, Amelia and myself. Dinner was superb, sheer perfection -- as always. With fabulous desserts provided by Christina's brilliant sister, Corrina (professional baker...see corinasconfections.com), Karena and yours truly.

From there we hiked it down to my folk's house in Baltimore. Last night (friday) we had a 70th birthday party for my Mom. We brought in our favorite restaurant, Tio Pepe's food, dessert and used their famed sangria recipe to kick things off. It was really wonderful. I haven't tasted that food since before Amelia was born. We never go out-out when we're down here because there's really no one to leave our girl with. Sooooo yummy! Had leftovers tonite too!

So this brings us to today. More precisely -- this evening when a girl fight broke out. Okay, I might be exaggerating slightly -- but it was cool!!!!! So, Nestor had been spending some quality time with my 17 month old niece, Maya and his little girl was not so happy about this. We were all just hanging out on the playmat...but Maya was getting books read to her and lots of Uncle Nestor's attention. Amelia was playing with stuff, but definitely keeping her eye on Daddy and Maya. Then, Maya took Amelia's little Mickey Mouse driving toy(which she was playing with). Amelia was not happy. Bubbie stepped in and gave Amelia one of Maya's babies (which she was NOT playing with at the time) and Maya hit Amelia in the face. Immediately, Amelia swung out and kvetched at Maya, but Maya's Daddy was quick to swoop in and take Maya into the other room. It was awesome!!! I know what you're thinking...but for us, we were amazed that Amelia stood up for herself. She never moves quickly and her swing was almost in slow motion -- but it was there and she was standing up for herself. We were so proud of her. NOTE: neither of the girls used any force here and no one was hurt at all. Just a little wounded pride.

The girls are friends again and all is well.

Amelia is particularly in love with her big cousin, Ezra(4 yrs. old) who is such a doll with her. He runs in and finds her. He loves me to stand her up so he can give her big hugs. She just laughs and laughs when he does this. He sits next to her and holds her hand or plays with toys with her (we're getting used to the sharing part of it) and is just so sweet. Amelia doesn't have anyone else in her life like Ezra. She doesn't have that kind of contact with other kids, special needs or typically developing -- and it's such a special relationship for her to have. I really adore Ezra for his blind acceptance of Amelia. It gives me such extreme joy to see the two of them together. Amelia is so lucky to have Ezra and Maya as first cousins. I know they are going to be huge influences on her life in years to come.

Putting it together

2008-11-18T17:01:00.002-05:00

Footage of Amelia walking down the hallway at UCP.
Not the best quality, as it was taken from my phone...but you get the idea.

We've been back from Long Island for a few weeks now and we're getting back into the swing of it all. Amelia is moving a mile a minute. She can't crawl or squirm around fast enough(still on the belly, but now with her head up and grasping the concept of using her hands and elbows for leverage). All of us -- parents, friends and therapists are in astonishment everyday by the amount of things she is doing. Sitting up and lying back down is a fun activity! I have taken a liking to "wheel barreling" her around the apartment. You remember what that is? When you hold someone's feet so they have to walk on their hands. Yeah, she does that! Nestor and I can't even do that. So, it has become our pleasure to have a little girl who we have to watch each moment -- not because of her secretions (although we do that too) but because she is into everything. YAY!

So, on Friday we went to UCP to play with their adaptive equipment and decide what Amelia needs now. Her stander is too supportive, so we are ordering her a less supportive one -- which is half the size that we will hopefully be able to throw into the truck and take with us when we go up to the house or out of town. We are also ordering the gait trainer, which is shown in the video above, because she did so well in it. She actually walked all the way down that long hallway in it! Michelle, the PT in the video, was giving her input on her back and making sure the gait trainer didn't slide out from under her feet. Other than that, it's all Amelia.

We are borrowing the gait trainer (called a Pacer by Rifton) from UCP until ours comes in. We took it with us this weekend to Evelyn & Carlo's (Nestor's sister & bro-in-law's) house. We put Amelia in the Pacer and let her hang out a little in it -- and she walked across the kitchen. It was amazing!!!! We are so proud of her.

She continues to do new things with her mouth too. She has been sucking on her bottom lip still and pursing her lips together. Nestor and I noticed, oddly enough, that she tends to do most of it later in the day to evening. Don't know why. Anyone out there know why? We are into our second week with Amelia's new Speech Therapist, John. He is very sweet natured and calm. First day, Amelia was cool with him, second day -- a little more fiesty, by the third day and on, poor John is being given a run for his money. She is playing him like a 2-3 yr. old. He is incredibly tolerant, resourceful and is out and out trying very hard to become friends. I think he'll break through once they get to know each other a little better.

Tomorrow night will be our first Team Meeting for Amelia in several months. It will be very interesting with all the new people in her life. We are still searching for an OT -- so anyone out there who knows a fantastic OT who will work in the West Village -- let me know!

Tomorrow is also an extremely important day because it is Spike's Birthday! Yes, Nestor's little boy is all grown up. No longer a teenager -- he's going to be 20. I can't believe it. I met Spike when he was 10. He had never tasted raw cookie dough -- he was innocent. Now he's a Pre-med junior at Lehigh, with a beautiful girlfriend and has maintained his level headedness and sweetness. We are so proud of you and love you so much Spikester and know that the best is yet to come!

Thanks Jodi

2008-11-06T19:11:00.003-05:00

Thank you for honoring me with your favorite blog award( see badges above). You are so funny and I think you are absolutely justified to give out your own awards.

For those interested in what I'm talking about go to http://rallycapsdotnet.blogspot.com/2008/10/and-blog-award-goes-to.html

Your not so bad yourself sweetheart! xo

Heads Up

2008-10-28T09:20:00.003-04:00

Seriously, she's keeping her head up when she belly crawls. It's quite remarkable for us. We're on our last week here at Therapies 4 Kids. It's been quite a experience and we are filled with excitement to get back into our "normal" lives, back to all Amelia's wonderful therapists who have all been so accomodating and patient with us as we took off for two months to do this with her. I am also filled with the fear of Amelia losing some of the extraordinary gains she's made. I feel a renewed energy to stay on top of all we've learned out here and really keep applying them to our everyday life. Wish me luck...I've been saying the same thing about a diet for myself and surprise, surprise...hasn't happened (okay, I know it's not the same thing -- but everyone's made resolutions).

Amy, PT at T4K's, is a so strong, smart, dedicated, compassionate and intuitive with our kids. She is truly a kid whisperer. We will miss her terribly. Hopefully I'll make her proud when we see her again and Amelia will still be doing all she's doing here. And what a huge amount of progress we've made.

It's been slow, but in the past several days, Nestor and I have noticed lots of new things happening. Amelia's fine motor skills have improved. Lots more reaching out for everything (including faces and hands) and exploring her toys with two hands and really looking at what she's in to. Weight bearing on the hands is what improves fine motor skills and Amy's been crawling --- sometimes wheelbarreling her down long hallways everyday for about an hour or so. It's a huge amount of work in which she used to scream her head off. These days, Amy sings her little songs and Amelia laughs a lot more than cries --which is awesome. Don't get me wrong, it's by no means easy, Amelia still complains, but no where near what she used to.

Amelia's gross motor skills have also remarkably improved. She is crawling so much better than before, as I mentioned earlier. Her head is up and her hands are really digging in to pull herself forward. She's just so strong. When you sit Amelia down, she's solid. Very little trying to balance her perfectly so she doesn't topple over, she just sits, or pivots, or grabs her toys, or anything else in her line of vision that she wants. She's into everything and I love it! Amelia's walking is getting sturdier, but it's her standing that is really impressive. She can stand at a table (with AFO's on) and play with a toy, by herself for 1-2 minutes without any support from us. Truly incredible! We brought over a Little Tikes shopping cart and we've been walking and standing her with it. It's the perfect height for her and we put a couple sand bags in it to weight it down so it won't tip over (most push toys are too flimsy and are made for a 1 year old, so they're too short). Amelia can stand holding the cart for minutes and is getting the idea of pushing something while walking, although it's still very hard. The other truly mentionable thing is that when we put Amelia in the therasuit and put her in the bungees, she is using the least support she can have in the bungees. Also, when we started standing her in the bungees without her AFO's, to get her feet used to the feeling and challenge of no support, her feet and legs would turn red and purple. She would howl and scream at us. I was always incredibly upset by this but Amy would tell me that it's because she's not used to really weight bearing into her feet -- yes, we have the stander at home, but she is sooooo supported that there isn't a whole lot of pressure on her feet. Well, I am happy to report that that is no longer happening to Amelia. Her feet are rosy and pink at all times now. She can stand for 45 minutes and she is strong enough to do it and most importantly -- comfortable. The walking has remained stable and constant. We can now walk Amelia supporting her under her elbows or just by the hands, which is so much less support than we used to give her.

As for therapeutic tastings, Lia, Amelia's wonderful nurse, showed me how she's been feeding her. One day, by accident --while trying to place the food to the back of Amelia's mouth as we've always been told to do, she missed and it landed on the front center of Amelia's tongue. She watched as Amelia started moving her tongue around like crazy and pushed the food to the back of her mouth and swallowed it. Now mind you, Amelia has incredible coordination problems, that being at the top of the list. She's not getting the food back perfectly everytime, and she fatigues easily but at least she's making the connection that that's what she's supposed to do. It's a huge thing that she's figured out. It's a very exciting step!!!!! Also exciting is that we found a speech therapist last week, finally, so we'll have a professional joining us again -- which is a huge relief! Also, it seems that Amelia's open mouth posture is lessening. She is actually pulling in her bottom lip and sucking on it. I can actually hear her sucking on her bottom lip! AMELIA WAS BORN WITHOUT A SUCK REFLEX. That's how huge that is.

The other thing we've been doing with Amelia for the past couple of weeks is pediatric accupuncture/accupressure. The facility we go to for Therapies 4 Kids and HBOT has just brought in a Pediatric Accupuncturist, Massage Therapist and Child Psychologist (obviously for the older kids). It's become a one-stop shop for kids with special needs. But seriously, it's really a terrific idea. For example, we got to the facility at 7AM, did our 1st HBOT dive, went to T4K's for our 4 hours of PT, then to Dawn(Accupuncturist) and Raquel(Massage Therapist) for 30 minutes of accupuncture/accupressure with some facial massage added for good measure and lastly, back for our 2nd HBOT dive of the day. We got back to the Ronald McDonald House around 3PM. Quite the full day and all under one roof! Pretty cool stuff. So the jury is still out on the accupuncture/accupressure. I can tell you that this is the 3rd week and with Amelia's incredible gains, it's impossible to tell what's doing what. It's an anchient medicine though, so I feel like it's gotta do something, right?

Overall, it's hard to crystallize everything because I see so many changes. She's just a different kid who is aware, communicative (thru her laughing or complaining) and strong. I can't say that word enough, strong...I just see and feel it.

Anda Le (Ride 'Em)

2008-10-21T19:29:00.003-04:00

Another day, another cold

2008-10-15T09:00:00.005-04:00

Blurry yes, but cute!
Just wanted to show you Harley, a Golden-doodle, who is one of the therapy dogs that visits on Sunday evenings at the Ronald McDonald House.

Amelia got sick again this weekend. It started Friday night. I was up with her every 20 minutes when she would either cough or sneeze. She was a faucet on Saturday and needed so much care I couldn't even go to the bathroom without pulling her in there with me (lovely, right?)...by the late afternoon her temp was up and I was up with her all night Sat. night. We took her to the Ped. on Sunday afternoon. Needless to say, we took Monday off from Therapies 4 Kids and went back to LI Monday afternoon and started back on Tuesday morning.

I bumped into the other Amelia's mom, Dora, from the playground (see several posts earlier), who is pregnant again --YAY! Who put it best by saying that everytime Amelia gets sick, she just gets a "touch" of it. I agree. I'm sick this time too, but not nearly as full blown as my girl. Just "a touch". You know what I mean?

Anyway, so here we are, Wednesday. Amelia still has strong leftovers (and I was so hoarse yesterday I sounded like some sexy porn star) from being sick, so we've decided not to start the HBOT this week. They don't want anyone going into the chamber who isn't at their baseline and it's obvious that neither one of us is. So we'll start next week -- fresh.

As for getting back into therapy this week, she's been doing well -- for a sickie! Amelia is definitely not where she normally is, but Amy is being very easy-going about it. She's pushing her, but not too much for her physical issues this week while she gets her strength back.

My folks are in Germany and Poland doing the inevidable tour -- the one that all older jewish folks do, before they're too old to do it -- visiting concentration camps. OY! What a fun and romantic trip to take for your 50th Wedding Anniversary!

The Holidays and Beyond

2008-10-07T10:26:00.003-04:00

When last we heard about our heroine, she was entrenched in intensive suit and HBOT therapy. We ended the month of September with a bang and headed back to the Big Apple for a few days of respite.

During which, friends from LA, Sal and Mateo Lopez, visited us in their hunt for the perfect college for Mateo next year. Neither of them had seen Amelia since she was 3 months old when we shlepped her to their beautiful home for brunch -- in which Mateo and his brother, Diego were the most polite teens I've ever seen. As I suctioned Amelia and hooked up her g-tube feeding, they never gawked or asked one uncomfortable question. The two boys were gracious and treated Amelia like any other 3 month old -- signs of true gentleman. So, during this visit they got to see the new and improved Amelia. No suctioning and a tower of strength compared to the last visit! I think they were pretty blown away. It's always so cool to see someone's response to Amelia having not seen her in 2 1/2 years.

The next day we packed up our stuff again and headed down to Baltimore for Rosh Hashanah. I hadn't been down there since Passover in May, so it was really nice to get back there to see everyone. I always get a kick out of seeing Amelia around all her little cousins -- and we have plenty of them now!!! She sees what it's like to not be an only child, with toys being stolen left and right...she was a little more perturbed by these goings on this time around, which I found to be a wonderful thing to see.

On the downside, our girl got sick in MD and had to go on antibiotics. I was up with her for 4 nights in a row. Also, not to be called selfish, Amelia shared her germs with Daddy and Bubbie. The good news is, we never whipped out the suctioning unit. We had to stay very on top of her with the bulb syringe, breathing treatments, tylenol & motrin and switch out the wipey (receiving blanket) we use to dry her nose, mouth and face -- but she managed it. She never became critical where we felt unsafe. It was really incredible to get through that without the intense fear we always feel when we hear her start to pant with a high fever that we end up in the ER that night. YAY Amelia!

When we got back to NYC, we threw Amelia into her homebased therapies. It was so wonderful to see all the incredible therapists who have been so accomodating and flexible with their schedules to stay on board while we take Amelia away for a month at a time.

We also took morning to visit Roosevelt Preschool, dragging Amelia along for the ride. LOVED IT!!!!

The first preschool we visited (several months ago) was Central Park West, which we loved because it has a big energy, with fun hallways and classrooms, ten steps from Central Park (which they take the out to often), with a rooftop playground, cool sensory gym and lots of adaptive equipment (including an adaptive bicycle)...in Nestor's and my discussion of it we had to admit that it's more suitable for higher functioning kids than Amelia. There was only one class of medically fragile kids.

Then we visited Rusk Preschool (a couple months ago) which is part of Rusk Rehab at NYU (a world renowned rehab clinic)...and I hated it. It's located adjacent to the NYU hospital on 34th Street and the school looks like a hospital. There is no big energy, it's a 6 hour a day program (and that doesn't include the busing time) the hallways are depressing, sterile and closed in feeling. But the therapists there are supposed to be top notch, with a feeding program that each child is in. For Amelia that is so important because, let's just say it, she's turning 3 in two months and she's not even close to eating. At Rusk, they do feeding twice a day. After not much debate, Nestor and I concluded that although we love CPW, Rusk seems to be more appropriate for Amelia's current needs.

And now on to Roosevelt! It's a new facility located on 34th & 10th. It's BIG energy, with wide hallways, tons of adaptive equipment, huge gym and soon to be sensory gym, wonderful staff (the woman I met at the school fair for Roosevelt happened to see us in the hallway and ran over all excited to meet Amelia), they also do two feedings a day (lunch and snack) and it's only a 5 hour program (not including busing time). The other thing which I absolutely love is that they are equipping every room in the school with adaptive communication devices. There are buttons, strings with beads on them and voice activated devices on the entryways of each doorway so that children can open and close doors for themselves and so on. It's so cool and I've never seen anything like it. Also, they are a curriculum based school but make a strong point of carrying over the PT and OT during class time. There were kids in standers and positioning chairs during class. Their wonderful principal, Karen Tumulty took us on an extensive tour of the new facility and explained that they do one book for about 12 weeks. They have pictures, words, interactive computer programs, etc. on the book they're doing so the kids get very entrenched in it. It all just sounded so exciting. The other thing we loved is that they have a sister school, literally across the hallway, called Gramercy Preschool. Gramercy is for higher functioning kids who are ambulatory. The nice thing is, if Amelia's needs were to progress beyond Roosevelt during her time at Roosevelt, she could seamlessly move into Gramercy across the hall. Sweet!

This past week we also had my cousin, David in from LA with his new, lovely squeeze, Barbara. David is another one who hadn't seen Amelia since she was 3 months old (once again, blown away!). Nestor and I had a really terrific evening with them which we ended by coming back to our place and watching the VP debate.

The weekend came on fast and on Sunday we packed up, yet again, and headed back out to Long Island to spend the month of October at Therapies 4 Kids. That's right folks...we're back! Amelia is really handling it like a trooper and doing wonderfully as usual. Her walking and crawling is stronger and stronger. I've been trying to really stay on top of it at home and carry over as much as possible. The thing that sort of blew us away yesterday was her standing. Amy (PT) stood her up at a table with a toy on it and eventually let go and OMG! There was Amelia....barely leaning on the toy (she was driving the steering wheel) standing by herself. She did this several times, for I'd say 10-30 seconds each) until she just got too tired to do anymore (she had already walked the length of a football field-- okay maybe not that far...but she works hard, darn it!) What a rockstar!!!!!

So that's our latest and greatest. Nestor left this AM for South Carolina for a few days to shoot an episode of "Army Wives" -- he'll be back Thursday. Until then, just me and my gal, oh..and our nurses...and all the families at the Ronald McDonald House...and Amy(PT) and Edna (OT)...other than that, it's just the two of us! It really does take a village.