Tuesday, January 15, 2008

We're preparing over here for our next round of doctor visits - we go to Children's Hospital for the next three days of clinical testing at their WS clinic. Tomorrow is an easy day: audiology first then a comprehensive medical exam by his geneticist, whom I adore. I was glad we were doing audiology because we were trying to fit in a hearing test at some point because he hasn't had one since he was two months old. I don't suspect we will find any problems, but it's been on the list of things "To Do" since September.

Thursday is a full day: OT for two hours, a two hour break, then behavioral psychology for an hour, and finishing the day with speech and language therapy for two hours. Speech at the end of the day??? Yeah, that'll work. I know something has to go last and hopefully they have a method to their madness. Friday starts off with two hours of PT then an hour-and-a-half of neuropsychology testing (whatever that is). I am interested to see what kind of info we will be getting, especially since we just saw Dr. Mervis and Dr. Morris two weeks ago. On top of all this, Brady has a little cold that will hopefully not impede the outcome.


On a sidenote, who needs screenwriters when we have Reality TV?? "American Idol" started tonight and Michael got to stay up late and watch the first group of high-hopers parade in front of the camera showing off their wares. One of the singers who made it through to the next round was a young 20-year old girl who has a two-year-old daughter with Rett Syndrome. Not knowing anything about the syndrome, I Goodsearched (http://www.goodsearch.com/) it and read the description about the condition that almost exclusively happens to girls. It broke my heart. The mother said her daughter was growing normally, walking, "snatching cookies from me" and then suddenly, it was like she "went to sleep one night and woke up a different person." Rett Syndrome is described as "after 6 to 18 months of apparently normal development, girls with the classic form of Rett syndrome develop severe problems with language and communication, learning, coordination, and other brain functions."

Of all the things we have gone through over here, all the disappointments and heartbreak, I still cannot imagine having a child all of a sudden deteriorate before me. This mother was a young woman and I am amazed at her strength to tell her story, very sensitively, positively and strongly. She was not some attention-grabbing celebrity-wanna-be. I'm sure she touched many hearts.

My (local) friend Nancy has always been a Reality Goddess and I think she is rubbing off on me. While watching "American Idol" I taped "The Biggest Loser" - I'm not sure when I got into that show. And of course, "Big Brother" starts in February, normally a summer-only event when you could justify watching it because nothing else was on. Last week I also caught "How To Look Good Naked" on Lifetime -- a very endearing show in which the people change their hair, makeup and bra and instantly lost 10 pounds. One of my secret loves is "My Sweet Sixteen" on MTV where obnoxious rich girls and boys plan $100,000 Sweet 16 parties. I did try to watch "Celebrity Apprentice" last week, but was very sad that Trump fired Nadia Comaneci whom I adored growing up that I am not checking that out again. And this season, Michael and I were very excited to see Jen and Nate kicked off "The Amazing Race" last week and are preparing for its finale this Sunday. It's actually a very good show for Michael to watch - people race around the world and intertwine themselves into the cultures of each country. We are both learning a lot from it

And, no, Nance.... I am not watching "Little People, Big World"....YET. I have to stop somewhere.


camille said...

You should definitely watch Jon and Kate plus 8. First of all, it's hilarious, and it's about this couple who have two 7 year olds and six 3 year olds. OH MY! But everytime I watch that I feel much better about my less chaotic life.
Give it a try, I promise you won't be sorry!!

Amy said...

OMG Kerry, t.v. much? You crack me up. I was so excited last night for A.I.!! I love January for that only reason, plus I just filed my tax returns, woo-hoo!

Julie said...

Diddo on the Jon and Kate plus 8, Noah even loves it. We watch Idol too. I actually went in labor with Noah when this part was on. Laughed so hard I started having contractions.

Tara said...

I had no idea American Idol started again last night! I missed it! We live for that show.....

And-I agree, I cannot imagine watching my child deteriorate right before me.

Nicole said...

Yep, we love AI over here as well. I was a mess over the little girl with Rett Syndrome. How devastating! I hope her mom goes far.

I am a reality show junkie as well. I did recently edit myself when I started watching "Rock of Love with Bret Michaels". Thankfully, I did draw the line there and turned it off.

Teresa & Shawn said...

Okay, finally catching up and chiming in over here. First of all, "oh schnikes" (don't even know how that is spelled), Shawn and I were super excited to see Jen and Nate go bye-bye.

Sounds like you got a bunch of info from Kentucky. Maybe not as much as you expected (or hoped for), but the hair bit was interesting. And LOVED the photo of Michael in the big ole glove!

I will be interested to hear what you think of the Boston clinic. We have yet to go, since I have heard mixed reviews and know it's a LONG three days. Good luck!!

Nancy said...

Oh you have to watch LPBW...it's filmed here in Oregon just 3 hours away from me!

I know a girl with Rett syndrome. She is about 7 years old or so. Erik adores her. She cannot speak but can get around. She is very stiff-limbed. She has hippotherapy right before Erik. Same thing as a baby...everything was fine and then BLAM. Abnormal. Her mom adopted her and her little sister not knowing this would happen. Heartbreaking but inspiring, this family. Another gal I know has a daughter with Phelan-­McDermid Syndrome. This one is bad, too, as any progress her kid makes can be erased forever overnight with no rhyme or reason...including walking and talking.

We are lucky. It's hard to see soemtimes, but we are.