Sunday, October 3, 2010

natural history study: take 2

what an amazing experience it was to return to the natural history study rather than go for the first time, not knowing anyone, and still feeling utterly alone at day's end.

THIS time was different. we knew what to expect. we knew a few families. our knowledge of rett syndrome has increased and we went with questions in tow - knowing we'd get answers if answers existed.

dr. glaze was as charming as ever and miss judy was oh so sweet with leah. you can tell these two truly love our rett girls - the love simply emanates from them at each encounter. according to both, leah is strong and vibrant and doing amazingly well. we left feeling our efforts over the last six months weren't for naught and that's a good feeling. 

i asked about hippotherapy and water therapy - only to discover the swimming i've been doing with her all summer was just as good {if not better} than any water therapy we'd ever pay for. that gave me warm fuzzies all over for sure. i did the right thing! yippee!! we also figure out a weaning schedule for leah's nightly sleeping medication. so far, so good. whew!

dr. motil is straight forward. she doesn't mince words and takes the health and nutrition of these girls very seriously. for that, i am grateful. but, when your daughter is a skinny minny, count on getting a few stern words from the nutritionist. 

leah's bmi was 13.2. if it drops into the twelves, they consider alternative methods of nutrition, such as feeding tubes. i so don't want to go there. i know it's a great thing for some of these girls, but i just want to have her eat regularly if she can. leah is strong and eats well - and a lot - but she moves, moves, moves. i know even if it appears that she's getting enough to sustain her physically, we still need to feed her brain and keep it growing. 

i'm on assignment for the next six months to get her slight 27 lb. frame to a whopping 33. that's SIX POUNDS a month. um...i'm open to suggestions. we've reinstated her diet from 9 months of age. however, she wasn't moving at all back then. it's avocados, butter, cheese and vitamin d milk at our house until further notice.
dr. killian was a special treat this time and looked at her bone structure. good to go there. although, some further explanation on leah's hyperlaxity {that she apparently inherited from her mom} will be discussed at a later date. 

judy kidnapped us for a second and let leah use her eye gaze computer. leah likes these things. too bad that, at about $17,000, they're a tad out of our price range. she's sitting still much better than before, even though she still needs to wander away and then return in order to "reset" her body. she's highly motivated by music and food and seems to be catching on much better to the concept of eye gaze in addition to pressing a switch with her chin or hands. yay leah!

we met up with some familiar faces {and made sure the apples made a repeat appearance} and even got to meet some new ones. it's strange to think we've only known these families for six months or less...and have only seen them face-to-face on a handful of occations...yet it feels as if they've always been an integral part of our lives.

we had to ditch ryan at the airport so he could go on a recruiting trip for work. since we needed to be back in oakland for the first annual northern californai strollathon the next day, we booked a hotel room and had ourselves a little sleepover. we tried to take a nap, but leah would have none of it. 
so we played with colleen and claire instead. claire was nice enough to share her PINK eye gaze computer with us. leah's still learning, but seemed to really enjoy it. she kept saying she didn't feel well. i told her that i didn't believe her - her giggles, smiles and bouncy behavior told me otherwise. but, three poopy diapers later, i believed her. way to go leah! loving this communication. i promise to take your word form here on out. we played on the elevators and had a grand old time.

we ate dinner with a few other families {where leah insisted on sitting in her chair backward}, bought a brand new book at border's to remember our fun weekend together and called it a night. we were pooped!
eleven hours later, a well-rested mother/daughter duo made their way downstairs to a buffet breakfast with some other families {where the daughter part of that duo ate 10+ pieces of watermelon and the mother part of that duo left her invisalign braces on her plate for the server to throw away. about 20 minutes later, i realized they weren't on my teeth and flipped. out. i ran downstairs and, while panting, tried to explain. the server smiled and said, "teeth?" they saved them! yippee!! granted, they thought it was a toy for leah not a piece of orthodontics, but...}. 

then we showered and got ready for our big stroll!


Erica said...

you are so good about taking pictures! i really need to be better about that!
great post as usual and when can we get together??

Ann Marie said...

Abby will be so jealous when she sees these pictures! I can't wait for her to meet the CA girls!

Rob and Marseille said...

1. Christopher might just barely weigh 33 lbs and he's 5 1/2. Also a skinny minny (is there a boy way to say that?) He's just now wearing 4T clothes that are a little big for him. We did take him to see someone and they just said for him to eat green veggies and come back in 6 month. (the appt went better than that, but it was a while ago, so I can't remember clearly)
2. So the eye gaze computer is used for communication? That is cool! I have a friend who has cerebral palsey, and she would use a clicker to tell what she wanted (a light lit up at each (interchangeable) picture on her tray of her wheel chair. She would watch it, then click when it got to what she wanted to say. For yes & no questions we would stand in front of her and sign yes w/one hand and no with the other & she would look at which one she wanted. This was when we were in 6th grade. I know Leah has more control over her body& probably has other ways to tell you things. But that eye gaze computer does look cool! Can't they make something like that on a leap star game? Then it would be like $50.