Monday, December 31, 2007

Kathy's Update cause hers are so much better than mine!

Happy New Year!

We hope everyone had a wonderful Holiday season, a fun and safe New Year's!

Skyler is doing well these days. Everyday he is getting stronger and more back to his normal self. A couple of days he has been able to stay in his chair for up to 5 hours at a time. He lies down for about an hour and right back in his chair and back to controlling things! He woke up the other morning at 5am (Oh Joy!) laughing and giggling about a New Idea he had!! As soon as he was in his chair, he was telling us the script/scene for his next videotaping extravaganza! Since that fateful morning, he has made 2 new DVDs of coordinating things on one of his video tapes (usually news shows or home movies) with one of his computer games. They are called "Same Time" and "Same Time 2". He thinks they are GREAT!! (We video tape the scenes he wants, then he and Chris burn it onto a DVD. Quite the project!)

Skyler's appetite is a little better. There were a couple of rough weeks with the eating. He just didn't want to eat. He said it hurt his throat, would take 2 bites of things and then just stop. I think he has lost about 10 of the 15 pounds he had to gain for the surgery. The last couple of days have been a little better. He is eating more and asking for stuff to eat. Some days he is almost back to normal, some days he is only about 60-70% there. He is still coughing quite a bit. I took him to the ENT about his cough before Christmas, and he ordered a swallow study to see what is going on with Skyler's throat. We are waiting to get that scheduled. Skyler has a lot of gunk in his throat. It's hard for him to swallow it, cough it out and it is too deep to be suctioned. (Sorry if that was too graphic or too much information) We are going to have Skyler work with a speech therapist who specializes in feeding issues and get some ideas on what to try. We were hoping the surgery would help with his coughing, but it hasn't so far. He still has a cervical curve and the rest of his body
is straight. Maybe with time things will figure out the new alignment and start
working better. So far no one in the medical profession has any answers for us.
One thing the surgery did fix, was his constipation problem!! I guess things like to be straight and not all squished together. He likes to tell us,"You are out of poop!"
Cute! :-) I guess his use of "I" in the other sentence was drug induced!

Skyler is still having trouble sleeping. He needs to be turned about every 2-3 hours. It is getting a little better. A couple of nights he made it about 4 1/2 hours without needing to be turned!! A couple of nights, I thought he slept well, but Chris told me that I Was The One That Slept Well!!! So much for "Mother's Ears"! :-) Sleep... A full night of Sleep... What is THAT anyway??? And is it really necessary????

We have Mastered The Shower!! The first few showers, Chris, myself and the bathroom floor got more water and soap on us then Skyler did! But we figured it out. He stays in his sling and we roll the whole lift into the shower and it works quite well. However, it is a little cumbersome getting the whole rig into the shower, we now realize we need to remodel his bathroom making it a lot bigger. Time to look into all of that...

Skyler will go back to school on January 9th. He will go 1/2 days for the first week
or so and see how he does after that. I think he will be just about ready to go back. It will be good for all of us to get back to a regular schedule. The first day we'll show the aides how to use the lift to transfer him and how to move him.
So, there you have it.
In a nutshell, Skyler is making very good progress. The visiting nurse was
amazed at how little pain medication Skyler has needed lately. She also commented on how Strong-Willed he is (she was here when Skyler and I were having a "Let's Make A Deal" session on what he could and could not do) she certainly got that right!!! And to be honest with you, I wouldn't want him any other way! Whatever you do, Don't tell Skyler!
Just remind me I said that next time he and I are butting heads!! :-)
Have a great day and the Very Best in the New Year!!


Hot Lemon said...

Ooooh there's good news TONIGHT!! though I'm not sure if "remodeling the bathroom" ranks there...

Hey, I just had a question come to me th' other day: what happens with the bars as Skyler grows? I mean, if they're literally screwed into his vertabrae, what happens as he grows taller? do they extend, or won't he be getting THAT much taller? I don't know a thing about this sort of proceedure, hence why I ask.

Well, it's 10 PM and I'm off to bed-- 2 autistic toddlers have wore my butt down to a nubbin again...

Anonymous said...

I'm sure glad to hear that he's feeling better and getting back to his old self. Here's to a great new year to all of you!

SkylersDad said...

HL: The bars hold everything in place, so we delayed this as long as possible. The docs say that he shouldn't get much taller now. It is tough when you have to go in and remove the rods and repeat the surgery.

Suze: Thanks so much!

the princess said...

i have great admiration for your family. glad to read that things are getting back to normal for you.