Thursday, January 06, 2011

This and That

Sorry I haven't written in a while, but dammit, I'm just pooped.

Right after Christmas, we scheduled a myriad of tests for Big Kid. Well, I mean we scheduled them months ago, just wanted to do them after the holidays. One year after his H1N1 crisis, he's still on oxygen 24 hours a day. There are many reasons why this may be happening, ranging from pulmonary hypertension to intensive scarring of his lungs. So for the last two weeks, he's been in and out of the hospital and imaging facilities. He had an allergic reaction to the contrast dye they use for CAT scans, and boy-oh-boy, wasn't THAT fun! Not!

We were able to FINALLY get him switched on the insurance----it actually wasn't the insurance company's fault really---it was his bio dad's company that was causing us the problem. Right after he was released from the hospital last year, they said he had to continue with college to be insured. That last spring semester was a nightmare.

Big Kid took two classes online. Thankfully they were review classes (nothing wrong with his long-term memory), and his instructors were on board. Even so, he struggled and barely passed. He has significant processing problems, and was only able to complete a portion of the classwork. Luckily, since they were review classes and he maintained information he had learned before, he was able to do fairly well on the tests, which pushed him over to the "pass" section.

However, he'd never be able to accomplish that for any other classes, but it gave us time to gather "evidence" to switch him from "dependent student" to "permanently disabled". Whew.

So last fall, he wasn't in school. But this is what he's been doing:

Walking every day with his tank. He's committed to getting better physically.

A couple of months ago, his psych changed some of his meds. Some of what he's been taking has made him gain an enormous amount of weight over the years, and he was in a pre-diabetic condition. He's lost 40 pounds since July.

Big Kid has always been my "glass half empty" kid, while Little Guy is the exact opposite. Strange to think they came out of the same womb. ;-)

He started on Abilify about two months ago, and the difference is amazing. For the first time in his adult years, Big Kid has been thinking positive, and working towards improving his life. He's been working on all the goals set with his cognitive therapist, and even joined a church.

Not going to get into all the church stuff, but in my opinion, getting involved in things outside himself is a big huge plus for him.

Got more going on, but just wanted to send an update.

Catch up with you all later, Gators!

13 comments:

Stinkypaw said...

This is great news, all your (and his) hard work is paying off, and that is a very good thing. As for the church stuff, it's all good - who cares really, as long as he's not giving all his money away - if it makes him feel better about himself and life in general I'd say it is good.

Rootietoot said...

Hooray for The Big Kid! and for you, Mom :) Here's to a much improved year over last, eh.

Jennifer Jayhawk said...

Wow! No wonder your exhausted. Sounds like Big Kid is making good progress.

Thanks for the update (and that I don't have to look at that disturbing Santa:)!

Katie :o) said...

Oh! Thanks so much for posting! I love hearing what all is going on for you! And it sounds like so much positive stuff for big guy!

Crazy Mom Tats! said...

Good for you! and especially good for Big Kid - interacting with folks outside has a huge positive impact. I'm so glad the Abilify has helped.

Small steps add up!

Jeanie said...

The insurance change is big...so glad you got that done. I'm glad to hear that things are moving in such a positive direction. What a difference a year makes!

OneEar said...

Whenever I'm handed a cup of Bud Light at a tailgate, I think, "Well, at least the glass is half empty."

Green Girl in Wisconsin said...

I'm glad things are moving ahead--and you are right, a good church connection can be a HUGE lifeline, can't it?

gayle said...

Glad he's feeling better! Sounds wonderful that he is losing weight and walking!

Joanna Jenkins said...

So much has happened in one short year that must have seen like a decade at times. You guys are an amazing group and I'm glad things are looking up.
Cheers to a VERY happy and healthy 2011. YOu sure deserve it.
xo jj

Ha! Word Verification is- Bless :-)

Chris H said...

What neat news, Big Kid is really getting better. I hope his oxygen dependancy can be fixed over time.

michele said...

Joseph is now 10. He's been on Abilify for about a year and a half. It's a very small dose. We knew he needed something, but were very leary of medicating a body that is so young. Anyway - the Abilify mixed with a different type of school made a complete and total difference. In his words, "It makes my brain calm."

Cheryl said...

Hello,My Friend,
I am so sorry your year has been such a difficult one. This one seems to top all the others as going down as one of the worse years ever for you. I'm so sorry and I'm glad it is a new year and so far things seem to going in the right direction.
I hope Abilify keeps working for Big Kid and he kips his motivation strong and dedication to improving himself. I could not agree with you more about getting kids involved with other things, helps them see beyond themselves. That seems to be the key with Melanie.
You really need a vacation, a time for you to just relax. I hope sometime soon, that becomes a real possibility. I also hope your are keeping up with your own health.
Thinking of you a lot.
Love,
Cheryl