Tuesday, December 30, 2008

board games played this week: 3*

So much to say. Tonight I gave Punkin his first dose of Clonidine. Oma, Punkin, and I went to the Fragile X Clinic in Chicago yesterday. We met with one doctor, a pediatric neurologist who is an expert and a major researcher in FXS and FXTAS. She was very nice; Oma and I talked with her for nearly 3 hours. Punkin, on the other hand, pretended she didn't exist. I wasn't sure if I should 1) shrug and say, "Well, this has been one of the most stressful weeks of his life.** What should we expect?" 2) be mortified at his blatant rudeness or 3) laugh. What I ended up feeling was a mixture of relief that she saw some of the bahaviors most doctors haven't and sadness that she didn't have a chance to fall in love with my sweet, funny guy. Seriously. He didn't even say "Hi guys!" or "Ta-DA!" He pretended to not know his body parts, his colors, his NAME. The doctor definitely knew he was being OPPOSITIONAL. She said OPPOSITIONAL. About my BABY. Jerk. =) She also said he probably wouldn't show his true abilities on most tests and thinks he has a good prognosis for the future. It was nice to hear, and overall a good visit.
A few other exciting things happened this week, most notably when my car had to be towed out of my parking lot because my landlords can't seem to find someone competent enough to put salt on the hill. But I'm over it. Punkin handled it quite well; the Buzz Lightyear Flashlight I, err Santa, brought helped distract him.

Speaking of presents, we got some awesome ones today. Lion sent me this piece (which brought tears to my eyes because the photos are from her visit) as well as a plush Buzz Lightyear for Punkin, who went around all afternoon saying, "Foo Fifinnity nand NEENYEOND!" SOO funny.



His other set of great grandparents sent a light-up drum set. Haven't put batteries in yet. I'll let you know how long it takes before I take them out again. His OT actually recommended one of these (but in a smaller form), so we'll see if he likes it or if it's too loud.

We really had a pretty simple Christmas. I got him one of those toys where you have to press a button or turn a knob to make a character pop up. This one is Sesame Street themed and sings short songs, too. And Oma and Opa got him a giant magnetic dry-erase board so he can play school. He loves to put magnetic letters on it and use markers to write just like his teacher.

OOHH, We both got our hair cut! I'll post a pic later. My camera's still broken and I had to use my old one for the above photos. Mine was long enough, and I cut enough off, that I was able to donate it to a cancer foundation. It went from the middle of my chest to now just above my shoulders. I feel older now and less like a head of great hair walking around on a person and more like a person walking around with a great head of hair.

* I do not do bored games, I mean board games. Too much sitting an strategizing. And what if I hurt someone's feelings when I give them my "skip" card? No thank you. But it made my sister happy.

**This was the most stressful week of his life because Great Grandma and Great Grandpa (FX Carrier) came to visit with Great Great Uncle Bill (FXS). Then 21 (?) people from my dad's side of the family came to visit a day later. It was a little loud at Oma and Opa's house. That in addition to being away from school and out of his bedtime routine wore on him, though he handled it very well I think. By the last night he was making himself vomit and his ears were a constant fiery red (a sign of hyperarousal). But he has asked for his "friends" a few times since -- so I know he had fun.

3 comments:

Kristiem10 said...

Good to (finally!) get an update. Sounds like you had a nice Christmas. Well, except for the vomiting, but whatever. I can't wait to see haircut pics. Isn't Dr. B-K the best?! And, I am going to need to hear more about this Clonodine thing. Thank you. :)

Pumpkin's Oma said...

Yeah, about time we heard from you :)
I didn't totally understand the drum set--that is huge and awesome--but staying at your house ;)

LOLaughs and LOLove

Oma

Haley-O said...

I'm so sure the lady could see all Punkin's loveable qualities.... :) I mean, how can you not. He's a special little dude. We all love him. :) Hey good luck with that drum set!!! LOUD!