Monday, January 12, 2009

Five Months Post-Surgery

January 12, 2008

Aiden has met all of the goals we set forth in physical therapy. Six months ago, it took him 6 minutes to walk the length of the hall at school, with assistance. This week, he did it in just over a minute, completely by himself. He is learning how to ride a tricycle and he can go up the stairs by himself (I'm right behind him, of course). It's just amazing.

There is a possibility that we can start weaning him off his seizure medication, Topamax, next month. Since we haven't seen any signs of seizures since his surgery in August, his neurologist thinks we can slowly reduce his dosage until, eventually, no drugs at all.

It's already very clear to me and the people who see him the most, how much more aware Aiden is of his surroundings. It's almost as if the clouds have been cleared away and he can see things the way they are supposed to be seen. Aiden is much more verbal and he trys so hard to talk. He attempts to mimic the sound of the word you are saying but the letters are wrong. For example, if you say banana, he says danana. And bye-bye is duh-dye (with a backwards wave). Tongue is Da-tat. Walrus is wa-ra. He hums the chorus of Jingle Bells and the first verse of Twinkle Twinkle. I think that is major progress! He does get frustrated at times when he can't communicate his wants and needs and has developed a bad habit of hitting himself on the head. When we tell him "no" he hits more and harder and then smiles. So, we try ignoring the behavior and it seems to work a little. It's hard to say if he's doing it just for attention or out of frustration. Maybe both.

Aiden is eating a wider variety of foods. Before he would only eat stage 3 baby food. If we'd even try to give him something homemade, he'd strongly protest. He still can't chew food but he will accept pretty much anything pureed. It's nice because he eats the school lunches and I can just mash up something off a menu at a restaurant instead of bringing jars of baby food when we go out. He enjoys feeding himself, especially yogurt. That's his favorite thing to eat!

This Saturday is the SWS California Family Day. Eleven families are coming, 45 people total. It's going to be so great to meet people who can relate to living with a loved one with Sturge-Weber Syndrome. I will post an update and pictures on the website.

I hope everyone who reads this blog is doing well.

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