Superstar

Amelia continues to do incredible things. She is the complaining girl these days -- and although it has puzzled Nestor and I (trying to figure out what's wrong), we've been told by Eileen (the founder of "Bright Steps Forward" & "Therapies 4 Kids"), Dr. Schwartz (the medical director of "Therapies 4 Kids" & runs the HBOT) and the chiropracter who works in the same office as the Therapies 4 Kids space -- it's all good! Any communication is a great thing. She's been so easy going for so long and now her brain is waking up and she's trying to express herself. And ot be fair, Amelia's doing a lot more vocalizing all around. And today, she has begun to wave "hi". We brought her in to have therapy this AM and Victoria, the woman who cleans the offices waved "hi" to her and with Amy (PT) prompting the phrase "hand up for hello." Amelia put her hand up to wave!!!!! HUGE! And then she did it again for me. And again when Anthony, Dir. of Development, arrived. I can hardly wait for Lia, our nurse, to show up to see if Amelia is for real or just putting us on (hee hee). I'm feeling giddy about it. Also, Amy has been working really effectively with her all morning. I'm noticing that she's getting herself into quadraped with very little effort. With a little support under the chest, she's moving really nicely on all fours. So exciting to see this all right in front of our eyes...so dramatically.

Last night we went to a really fantastic fundraiser for Bright Steps Forward. It was held at a big old mansion in Westbury on the campus of NYIT. What a gorgeous place and lovely event. We're not sure of the numbers yet, but hopefully they raised a lot of moolah to help our kids. They are doing such important work here that is so effective -- and this is really their first big event. There's a bigger one happening in September and Nestor and I are completely on board to help out in any way we can. Big believers in what they're doing here. Not just helping to cope with your special needs child...but actually giving families rehabilitation and hope for their child's future.

By the by, if you were looking for us on Fox 5 NY news yesterday, I got the word late yesterday that our segment will be on on Wednesday (tomorrow) between 7 and 9AM. I know, I know...but this is the best we can do on finding the time out. I think you might be able to access it online too -- but I'm not sure.

Thanks for checking in and giving us so much support. We are so lucky to have such a wonderful community of support.

Amelia's Stand-up Routine

So this is from a few days ago...she's actually doing this move smoother these days. Will post new stuff next week when we edit it.

By the by, we were told that the Fox 5 interview will air on the Medical Report segment on Monday, June 16th -- not sure what time, will post when I know more. I believe you will be able to access it online if you go to their site too.

Day 9

We're almost thru our third week and it's been a whirlwind so far. Amelia is being pushed further than she has ever been before. She is being put in more weight bearing positions, arms and legs, for longer periods of time than I've ever seen her do -- getting stronger everyday. She complains more than I've ever heard her complain too, but that comes with the territory. Such a hard worker our little girl.

Amelia is standing up from a squatting position -- without her AFO's and we have noticed that she will actually hold her feet flat on the floor (she usually curls them) if you hold them down during the first or second time. And when the therasuit gets put on (with her AFO's) -- watch out! She is walking between two ropes (being supported at the hips) but moving her hands herself on the ropes and holding on too. The other day she let go of one of the ropes and I said "Amelia, you need to hold on with two hands to the rope." She looked at the rope and reached out her hand and took hold of the rope. I couldn't believe it! She actually listened to me! Not that she doesn't do lots of things we tell her to do, but most of them have been learned over time with repition -- like when we read her a book and tell her to turn the pages, etc. This was totally spontaneous and I was shocked.

Amy (her incredible PT) and either Lia (Amelia's stupendous nurse) or I walk her from the therapy room to the staircase in the hallway, supporting her under her shoulder and helping her shift her weight, but she is taking most of the steps herself. Out there she crawls up stairs, walks up stairs, crawls down stairs and walks down stairs. It's so much for her but she is getting the hang of it -- so incredible! To watch her struggle thru it, but less and less every time lets you know things are falling into place and making the connections.

Amelia is really sitting nicely now -- pretty solid -- and truly curious and exploratory of her environment. She likes to spend quality time with laundry baskets and bungee cords these days, just fascinated by everyday things. This may not sound like a big deal to most of you, but she's never really been as present and curious of her surroundings -- mostly she's just been trying to breathe and get thru the day. Also, she's much more vocal than ever. Laughing more and complaining more than ever before. She is making herself known and accounted for!

Today Fox 5 news is coming to Therapies 4 Kids to interview us, Amy (PT) and the other family having therapy in the afternoon. Then they're going to follow us to the HBOT facility to film there. Nice, me not wearing any makeup or anything because of the oxygen therapy...whatever.

The other exciting thing in our life right now is the Celebrity Golf Tournament with UCP of which Nestor and I are the "Journal Co-Chairs." It's late in the game -- our deadline is Friday, June 20th, but we are trying to help sell space in the journal for fundraising (here's the pitch).

We would really appreciate the sponsership. UCP, NYC has been so instrumental in getting us to where we are today. They have held our hands and walked us thru some of the most confusing and helpless moments that a parent could ever face. UCP helped us obtain a Medicaid waiver for Amelia so that when her insurance caps out ($2 million cap, Amelia is past the $1 million mark at 2.5 years old) we won't be stranded. All of her adaptive equipment is from there: a stander, a positioning chair, a creepster, a walker, a bath chair and a carseat. They are items that make our lives easier; helping Amelia grow stronger, with correct posture and positioning -- which is so important for her as she grows. We go to their clinics to have Amelia's AFO's fitted with their incredible onstaff Drs. and vendors. And mostly, they welcomed us into their family. No one is getting rich here. We are just trying to do our part so that families like us can feel as safe and comforted as we do, knowing they are only a phone call away.

If anyone is interested in participating please contact Jennifer Alpert at (212) 683-6700 x208 or email golf@ucpnyc.org .

Here are the options:

GOLD PAGE $1300.00
B/W FULL PAGE $900.00
B/W HALF PAGE $600.00

Day 4

We just came from our 7th dive. FYI- a dive is basically when you go into the chamber (think a tanning bed that closes completely and locks you in, but the top and sides are glass so you can see out) and they pressurize for 7 minutes until you're at the level you're supposed to be at, below sea level, in our case it's about 20 feet below sea level. But no Jamie, you are just lying in the chamber -- not actually going under water. It's all done with air and oxygen pressure. You hang there for an hour and then they bring you back up for 7 minutes.

Also, just wanted to mention our first 3 minutes in the Ronald McDonald House, when we got there on Sunday. We walked in with Amelia in her stroller and a huge Goldendoodle named Harley came up to us, nose to nose with Amelia, and gave her kisses. He's a therapy dog who's at the house every Sunday. So sweet! The kids were just lying all over him, he just hung out.

Yesterday Nestor had to go into the city for a couple auditions and got stuck there a little later than we thought. I happened to bump into the the family who is also having therapy here at Therapies 4 Kids, Tatum (4 yr. old girl) and her Dad, Tim, in the kitchen around dinner time. They were just sitting down, so Amelia and I joined them. Tatum is adorable! She's a twin with CP and low tone. She speaks and smiles constantly, her congnition is right on but has physical challenges to overcome. Amelia loves her. When we came up to them I told Amelia "Hand up for hello" and she did it! Right away! It was very cool. So the four of us had dinner lastnight and it was really fun. I asked Amelia if she wanted some food, which she hasn't been wanting because she's so tired. But lastnight she wanted food, so I grabbed it out of the fridge and fed her about a tablespoon of apple-blueberries. She swallowed it like a pro -- not much drooling or pushing it out of her mouth. Yay!

So now we're at Therapies 4 Kids and Amelia is crashed out for her 15 minute power nap.

Tomorrow we head home to NYC for the weekend. It'll be nice to get home!

Therasuits, spidercage and HBOT, oh my!

Well, we're on day 3 out here. It's been such a whirlwind! We drove out on Sunday afternoon and arrived at the Ronald McDonald House around 5:00pm. We walked in and the sweet smell of dinner was wafting through the house. We threw our stuff in our room, hooked up Amelia's feeding and strolled down to the kitchen to partake of an incredible meal cooked by a wonderful Lebanese family. We didn't know what to expect of these "donated" meals brought in by volunteers each nite, but let me tell you..yum..so good and such a nice communal atmoshphere. Everyone down at 6pm or so. You make your plate, sit down at one of the 25 or so kitchen tables and enjoy. You just have to take your dirty plates to one of the 5 kitchen stations for a rinse and put into the dishwasher.

Then on Monday, 5am, we were off and running for our first dive in the Hyperbaric Chamber. I was really nervous because I had no idea what to expect and I've never been in an enclosed space like that, locked in,for over an hour. Well, we got into our scrubs, laid down to have our vitals checked (always before and after the dives they have to take your blood pressure, pulse and check your ears for redness) and then off we went. Very scary the first time. When that door locked behind me...OMG!!! But, I just kept repeating that this is for Amelia and whatever good it will do -- I have to see it thru with her and that's that! She did really well...oh and me too! Although,I had a moment of freak out when the guy who runs the sessions, Harman, was out of my eyeline for awhile and I thought maybe he had walked out of the room (there is always someone sitting next to the chamber to make sure everything is okay) -- turns out he was in the back of the room folding laundry (whew!!!). Our dive #5, this AM was really good. Our bodies are getting used to the pressure changes (not as much ear popping for me and Amelia has tubes, so she doesn't get that discomfort) and the 75 minutes sessions seem quicker than the first few times. I made a DVD of her favorite Backyardigans, so she seems quite happy lying there, munching her fingers and watching her buddies.

After our 6:30am dives we race over to Therapies 4 Kids (8:30am) for her 4 hour intensive PT/OT sessions. Wow! What a tremedous amount of work. The first two hours are spent doing stretching and strengthening excercises. She lies on a mat,with her head on a pillow, sandbags on what ever limbs aren't being worked to keep them stabalized, then Amy, her incredible therapist, has little 5lb. sandbags attached to pullies and works each arm and leg. Then they do situps, reaching, grabbing, etc. Then she has a 15 minute break. After that she's put into the therasuit for the last half of the session. She does standing, with bungee cords to help support her, squatting, crawling and sitting. It's very exciting! Unfortunately, she has fallen asleep each day for about 10-15 minutes...each time around 11am, so we decided today to try and work until she falls asleep, then make that her break -- so she can get a little power nap. We'll see how that works. But she's responding really well and Amy feels she has really great potential and said she has really good muscle memory. YAY!

So after our exhausting sessions at Therapies 4 Kids, we race back over to the Hyperbaric place for our 2nd dive of the day. Now, you would think that she would go right to sleep, right? Wrong. The oxygen is very invigorating and keeps you very alert, it's not until afterwards, when we get out of the chamber, that she falls asleep. We've had to wake her up after about 45 minutes though, otherwise she'll sleep for hours and then not go down at night...not that she has been - party animal that she is!

After the afternoon HBOT we head back to the Ronald McDonald House, she's been asleep then and we wake her up around 3:45pm to take her around the house to play. So many places to go and thing to do there. And all the folks staying there are so nice. It's been great because we've had our angel of a nurse, Lia for the past 2 days. Today I'm actually alone, Lia works at a hospital 2 days a week and Nestor had to go into NYC for a couple auditions today, although he was with me for the 1st dive of the day and brought us to Therapies 4 Kids before taking off -- so for the afternoon routine I'll be flying solo. Shouldn't be too big a deal because it's not as much of a race in the afternoon.

So that's pretty much it. I'm sooo tired. It's amazing and exhausting! Very emotional and very exciting. What else can I say? I'll post pics and maybe video soon. Oh, also...so weird not being able to use any lotions, hair products, make-up, deoderant, etc. No diaper cream on Amelia or even chapstick -- all because of the HBOT. You can't have any oils or alcohol on you because you are in an atmosphere of 100% oxygen and those things are flammable. I told Nestor that I'm going to be looking like the people in the movie "Batman" (the first one with Jack Nicholson -- not the more recent version) when the Joker puts poison into all the beauty care products and the newscasters come onto the TV to report, without any products on and their faces are all white and pastey, with frizzy hair and pimples -- that's me! Really pretty!)

Bon Voyage (to be read like Bugs Bunny's 'Bon Voyeggie' please)

Okay...we're off to Long Island and Amelia's in the driver's seat

Boy do I hate the L.I.E.!!!!!

So we're off to Long Island on Sunday. I can't believe it. Saying goodbye to all of her incredible therapists for a month is really strange. They all seem so invested in her well-being. Each have shown me how excited they are for her and looking forward to seeing the differences when we return.

Yesterday Nestor and I drove up to the house (we left Amelia here with Lia, our wonderful nurse) to get the port-a-crib, space saver high chair, sound soothers, baby monitors (sadly, we don't need them in our little apt!!!), DVD player, suitcases, etc. What a day! I was able to get to Target with Amelia's, Titi Terry where I had the strange feeling my Mother must have had when she was buying stuff for me to take to camp. Amelia scored big because Titi got her some awesome clothes so she can be stylin for her therapies.

So tomorrow night we're having a night out for our 6th anniversary (it was Memorial Day weekend like 85% of other married couples) before we take off. Angelo & Maxie's, here we come. Martinis with steaks and sides people, that's what I'm talkin about! And Sunday it's off to the Ronald McDonald House to settle in for Monday's big start.

I'll do my best to post updates and any pics or video I can upload.

Junebugs

Daddy, Amelia & big bro, Spike

We'll be enjoying the Junebugs from the Ronald McDonald House on Long Island this year. We're very excited.

Last Thursday, we took Amelia to the facility on Long Island where she will be receiving her intensive 4hr. PT/OT 5x's weekly and Hyperbaric Oxygen Therapy (HBOT) 1hr. 2x's daily to be evaluated for the program. We'll be starting on June 2nd for 4 weeks total. Our day will be as follows:

6:30-8AM first HBOT dive of the day (they call the sessions "dives")
8:30-12:30PM PT/OT
1-2:30PM second HBOT dive
2:30-> rest and play at the Ronald McDonald House until the next day

The facility (www.therapies4kids.com) is incredible. They have therasuits and a spider cage for the kids. The PT there, Amy, is really terrific and seemed very competent while working with Amelia that day. Amy manipulated Amelia to get a sense of where she is and at the end had surmised that Amelia is a very good candidate for the program with lots of potential (YAY!).

The hyperbaric facility was also very cool. We actually put Amelia in a chamber (picture a tanning bed that encloses completely and is clear glass) by herself (without the oxygen) to see how she would do. She actually did great. Just laid there watching cartoons and eating her fingers but I'm going to do the dives with her. They told us that after the chamber is sealed and the pressure is stabilized the fastest they could get it open in an emergency is 3 minutes. Well, Amelia could easily choke and die in that time on her secretions if she coughed or sneezed -- as she often does in the morning. Some of the girls from the office came in and were teasing that they give me 2 dives before I decide that she can go in alone. I laughed too!

Yesterday we took her to the Pediatrician to get a clearance from her and to get hip and chest x-rays for Amelia and a chest x-ray for Mommy. Hopefully we pass with flying colors. And pretty much we're set to go!

By the way, the Ronald McDonald House is really amazing! We walked in and it's like Disneyland!!!! I feel like this is going to be a nice getaway for us too. The House has 42 rooms, each with 2 full size sleep comfort beds, a private bathroom, TV and toys for the child (which you are asked to take home with you!). The lobby is a huge room with overstuffed sofas and big stuffed animals on the floor for the kids to play on. There's a 2 story dollhouse for the kids to play in, along with a beautiful library, flat screen TV room (decorated for the Mets) and gardens and BBQ's in the backyard. There is a huge kitchen with 5 stations -- each family is assigned a station with cupboards and fridge space. The dining room is full of country kitchen tables and there's a solarium in the kitchen with a play area for the children. We were also told that a dinner is brought in every night at 6PM for everyone in the house if you wish to partake.

So that's our latest and greatest. This weekend we're off to Baltimore to celebrate my parents' 50th Wedding Anniversary. Wow. That's a long time. My brother and his kids are coming in from Albuquerque and my Aunt Andi and Uncle Neil are the gracious hosts of the beautiful house where we are throwing this big shin-dig. It should be lots of fun!

Also, I neglected to mention that a couple weeks ago Nestor and I attended a big event given by UCP called the "Women Who Care Luncheon." It was given at Cipriani's on 42nd St. (used to be a big old beautiful bank...still has the antique teller windows) and Nestor gave out the big award at the end of the ceremony. It really was such an important and touching event. We posed for some publicity photos, which we've done in the past -- no big deal, but this time was with Dan Rather and that was really cool for me. I mean, he's been in my house almost every night since I was a tot! Strange. I've met lots of people, and I'm not usually starstruck -- but every now and then I meet someone who makes me speechless. This was one of those duh moments (Dustin Hoffman and Tom Hanks are the other two!). Nestor and I have been named Journal Co-chairs for the UCP Celebrity Golf Tournament, which I believe means that they will be using Amelia's story in their magazine for the fundraiser. It's an honor and we are so happy to share our girl and her incredible journey thus far.

And lastly, Spike has made it to Shanghai safely and actually called Nestor this morning. He gives it a 9.5 out of 10 which is amazing. Just so you know -- he's NEVER given anything a 10, he's saving that...so 9.5 is tops! He and his girlfriend, Christine are exploring the city and having a terrific time. What an adventure for him!

So that's it for now. I hope everyone has a fun, relaxing, traffic-free, family full Memorial day.