Thursday, June 12, 2008

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 .

Here are the options:

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


Carrie said...

You have to let everyone know when you will be on the air! All such exciting great stuff!

Dani said...

such great exciting news...thanks for keeping us all posted so well! so glad to hear all the great new things happening!!! hugs!