Wednesday, September 3, 2008

Back on Long Island for September

So we've settled back into the Ronald McDonald House out here on Long Island. We have just completed Day 2 and I must say that Amelia has definitely been very tired, but is getting back into it.

I haven't been as diligent on the side sitting or quadriped playing as I should have -- I mean I do it, I do, it's just that as soon as she kicks herself out of it and yells at me, I sort of don't push the point and move on. But I do a lot of walking with her and today we used a Rifton gait trainer that Amy had lying around here at Therapies 4 Kids. It belonged to another little girl (it's purple and sparkly) who outgrew it. We're going to try a work with it everyday and if we see Amelia really getting it, Amy might ask the family if we could "borrow" it -- they're about to donate to the UCP lending library anyway, where we go all the time for everything so....all of Amelia's equipment will end up there eventually too (hopefully sooner rather than later). As you know, we have a Smartwalker for Amelia, which she just isn't strong enough for yet. This one has a torso support, a tushy suport (which we actually didn't use because she would just sit down on it) AND arm and hand support, where she doesn't have to actually hold on. It has velcro straps to strap her hands to the walker until she can hold on herself. Amy said she actually looked really good in it because although Amy was pushing it from behind, Amelia was taking the steps herself -- which Amy called impressive for her first time in. YAY! Go Amelia!!!!

Our first 3 HBOT dives were a bit of a nightmare for me because she just kept fighting me! She would be itching to get away...and seriously, there is NO place to go!!!! She would be all squirmy and complaining, her breathing sounded ragged and difficult -- and yes, her Backyardigans were on. Although, by this afternoon she was happy to hang out with me and hold hands for the 75 minutes (okay, she actually slept for the first 20 minutes, but after that we held hands and laughed). So I hope we've crossed that hurdle.

Friday we are supposed to be coming back from Long Island early (no therapy, just our early morning HBOT) and see Nestor's friend, Adam Ferrara, a hilarious comic, tape his one-man show. We've been to some clubs to see him and I must say that he is one of those guys that you're watching...and then all of a sudden, you're crying because he's so funny. That should be a fun night out and boy, do we need it!

Also, this weekend is Regina's (Nestor's Mom) 87th birthday and we are planning to meet Spike and Christine (Spike's lovely girlfriend) in NJ, at her nursing home, to give her a cake and song.

We saw Spike last weekend at school (Lehigh, junior year already!) and actually met Christine's sisters, brothers-in-law and Mother. They couldn't have been lovelier people. Her one sister is actually a chemist turned baker and has used her chemistry skills to alter favorite recipes -- just enough, to make them delicious and her own -- I know, because we test drove each dessert. Yumm! Her website is Her other sister, Adrianna is a wife, mom and lovely artist, who does murals and trompe l'oeil. Check out her site at Very entrepreneurial family!

We'll be back out here on Monday, so more from us then. Have a terrific weekend everybody!


Carrie said...

Hey Deb,
Can't find your cell # for some ridiculous reason. If you have a sec please call me. I hope you guys are doing OK out on the island. We miss you guys. Talk to you soon.XOXOXOXOXOXOXO

Jodi Cutler Del Dottore said...

Hi Debbie,
Marcie gave me your blog address, I'll be adding it to mine. You have always been a beautiful and special person and THAT is why you are Amelia's mommy. I look forward to reading your blog and life story in depth. For now, I just wanted to let you know I'm another one of your, Cutler
PS. read my post from three days ago...the Sisters poem.