Monday, January 14, 2008 we come

So tomorrow is the big day and we go to UCP to get Amelia fitted for her Smartwalker. She's also seeing the gentleman who fitted her for her braces, the Physiatrist, Dr. Evangalista AKA Dr. E and the rest of the crew over there. We're also going over to the lending library to see if we can borrow a piece of equipment called a "creeper" which helps facilitate crawling without breaking your back. At the present time, when we do crawling, it's me bending over Amelia, holding her trunk up and moving her arms and legs across the playmat. This would be a frame on wheels that she gets strapped into and would give her the support she needs to crawl independently. Sort of like the walker, but in quadruped. It's all very exciting for us. I feel like we're going to Disneyland with her a sense, it will be as exciting for her as being on a roller coaster because walking and crawling are sensations she's never really experienced in a solid way.

So, we're still having our nurse drama. We have a Wednesday nurse, a Saturday nite nurse (if we want to go out) and another nurse who will be filling in some weekdays, so overall, it's shaping up slowly. Key word: SLOWLY.

We finally got the paperwork approved for the new PT and she came over last Thursday for the first time. She was working awkwardly with Amelia, looked up at me and said "Amelia is SEVERELY hypotonic. Wow, I hope she can walk one day! I really do!". That was it for me. I waited until she left and then burst into tears. How can people be so stupid and insensitive? Saying things with no filter. I am fully aware of my daughter's challenges and I don't need a stranger coming into my home and blurting out whatever comes into her head as it comes into it!!!!!! Give me a break. I called my Service Coordinator and told her what happened. She blasted off a nasty email to the head of the PT's agency. Well, I got a call from him the following morning, apologizing for the unprofessional and clumsy comment. We have since replaced her with my friend, Carrie's suggestion of a PT she knows from her days with this particular agency. I spoke with him this evening. He's very, very busy and doesn't usually work in our neighborhood (therapists work by neighborhoods so they aren't running around in circles all day, on subways and buses and such) but is going to try and work out his schedule to accommodate Amelia's mandate of 4(days)x30(minutes)/week. Keep your fingers crossed for us.

And lastly, next Thursday, our little angel turns 2. I can't believe it. She is such a joy and brings Nestor and I so much happiness. Poor little thing is getting her 2 yr. molars and miserable!!!!! She's had a low grade fever for the past couple days, so we just have her on motrin and tylenol around the clock.

On a side note...It looks like Nestor will be working on the last episode of "Law and Order" for this season. We're rooting for the writer's strike to end soon...but it doesn't look good! It also looks like he may end up in LA in mid Feb. for a stage thing, which would allow him to be out there for the new movies (which were written before the strike) which are going into production now. Party time for the girls!!!!


Vanessa said...

uggh those PT's piss me off!! Is it like a prerequisite to be an ass? Good, one less job for her!! But God is getting rid of her to give you an awesome OT!
BTW, Down's kids are severely hypotonic and most of them walk!
love ya!