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Tuesday, October 7, 2008

The Holidays and Beyond

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.

2 comments:

Bryanne said...

Sounds like you found some great schools that are committed to getting kids the equipment that they need to thrive. Very exciting.

Jodi Cutler Del Dottore said...

Oh my God, Debbie, sounds like things are really going well. Your description of the schools and Amelia's progress made blew me away...really happy for you that you are finding the right people to meet Amelia's needs. And I know what it means to have people see your daughter after a long time so that they really notice the progress she's made...together with you. Damn fine job.
Beautiful post, beautiful family. Truly Amazing.
Love,
Jodi