Wednesday, September 24, 2008

Break time

Today is our last day here at Therapies 4 Kids...for a week and a half!!!! Yes folks, Amelia has been doing such tremendous work here that we've been generously invited to stay on for the month of October. This has truly become our home away from home.

As of Friday, Amelia has begun to walk, AFO's (leg braces) on, with support under only one arm. It's amazing! She is so steady standing on her feet and on Saturday, when we were in the city, I danced for the first time with her. She was standing in front of me holding on to my two hands. Just standing and letting me sway her arms side to side while I boogied down. It was so cool. Amelia just feels so solid.

This has all come with a lot of work, sweat and endless tears. Amy (PT) has been diligent in her focus on standing. She stands Amelia for 45 minutes to an hour each day in the bungees to build her tolerance. Her feet are bright red by the time we finish. Then we walk her (supporting under one arm) out to the treadmill and do a little walking on the treadmill. We're all improving our upper body strength as well as take turns holding Amelia on the treadmill -- and trust is quite the workout. I think maybe "Crunch" could create a new class using this. Could you imagine? All the ritzy women show up for class in their stylish workout clothes and $200. sneakers and there's a bunch of special needs kids with AFO's on, ready to walk on the treadmill. Hee hee!

Anyway, we are so grateful for this gift of therapy (thank you Bright Steps Forward) and are fortunate to be in a position to take the time away to do it.

The one thing we have felt is lacking in our time here has been Amelia's lack of speech therapy. As much as I try to do a little something with her, the bottom line is, I'm not a speech therapist and when Amelia is working so hard all day...she's really not interested in me "Mommy...who is supposed to save me"...poking around in her mouth or trying to feed her baby puree. So she blows me off BIG TIME. I have been at a loss. The other unfortunate thing is that we still don't have an SLP (Speech Language Pathologist) lined up for her when we get home either. It's been impossible to find anyone who can cover her EI (Early Intervention) mandate -- or partial mandate of 5x60 weekly, in the West Village. So it's no better when we go home.

Monday I decided that it's been way to long for a kid like Amelia to go without speech therapy. I know that all the PT we're doing with her is strengthening her overall -- which will ultimately help her feeding skills, but nonetheless, I want to find someone out here in Long Island. So I called a bunch of clinics and hospital programs, including an intensive feeding program at St. Mary's Hospital for Children -- which is equivalent to Therapies 4 Kids in the speech, feeding and swallowing world. I wanted to use Amelia's EI services out here, but was told by our Service Coordinator, (the lovely and extremely efficient, one of Amelia's biggest fans) Tamara Wachtel that by the time we get all the paperwork transferred over to Nassau County, we'd be home -- so that wouldn't work.

So I did what I always do when I can't figure something out, in this crazy special needs, services, therapy world, I find myself in -- I called Carrie (see "Sam's World" under Amelia's friends). She sent me in the right direction, as always, and hooked us up with one of Sam's speech therapists, Marie. Marie moved out to Long Island 6 months ago and according to Carrie, is incredible with augmentative communication and feeding skills. I spoke to her yesterday and she sounds fantastic. We're really excited to work with her and she has time for us on Wed. and Fri. We'll have to travel about 45 minutes to get to her...but who cares! It'll be worth it. And I feel like we have the whole package now.

Sadly, I don't know if all of Amelia's therapists at home, through EI, will stay on board. We have a lot of new therapists coming in who don't even know Amelia yet and therefore have a limited investment. Also, we appreciate that her therapists can't afford to leave their schedules open for us. So, I've spoken to a few of them and I have a few more to speak to...but ultimately we have to do what's best for Amelia and this is too wonderful of an opportunity to pass up. Next year Amelia will be in school and we won't have the luxury of just pulling her out for two months to attend an intensive therapy program.

This weekend we head to Baltimore for the jewish holidays (L'Shanah Tovah -- happy new year everyone!) and to take Amelia for hippotherapy (horseback riding therapy) on Saturday and Sunday. The instructor, Lynn, was my horseback riding teacher when I was a this is gonna be fun. I haven't been to her farm since I was a pre-teen. Lynn did hippotherapy for James Brady(from Reagan's administration) as part of his rehab. We are really looking forward to seeing how she responds to it.

Through Carrie, we have located a woman in Brooklyn who does hippotherapy using your childs' EI services -- which is just incredible, so we're working on lining that up for Amelia on Saturdays, when we're back in New York.

So much to do and time is just flying by. Soon the holidays will be here. I can't believe my little girl is going to be 3 in 3 months!


Anonymous said...

It is so wonderful to hear just how much improvement you are seeing with Amelia. We are so thankful and pray that it continues to the point you can write that you witnessed her running.
You are doing such a great job orchestrating all of these therapies and giving Amelia the best variety possible.
The Webb Family
(we were at the RMD House with your family in June)

Anonymous said...

You guys are really doing great, working together like a true team. I can not wait to see Amelia and give her lots of kisses for being such a great dancer. The short film was really touching and made me realize how lucky I am to have such a little angel of inspiration in my life, I can only imagine how proud you guys are of her.

laila said...

WOW WTG Amelia- how EXCITING!!! Thats such fantastic news...keep up th good work! Oh a good luck with the new therapys- hope everything works out!