Journal

Monday, November 19, 2007 4:53 PM CST

Check out the slideshows above! The top one has pictures of my scolosis x-rays and our deck and then some of me painting. The bottom one is of some of my artwork. Enjoy! (My sincerest apologies to those who have dial-up!)

Hello! It’s been a while, huh? I’ve been pretty busy the past few months. In Daddy’s last update, he mentioned that I got a new set of wheels. We’ve been putting it to good use, both around the house and going out.

When we knew I was going to get a new wheelchair, we also talked about adding a ramp on to our deck so that I would be able to get out more in my wheelchair. Well, that “little” project grew, and we decided to just rip out the old deck altogether and build a new deck to add a ramp onto. Our new deck is bigger than the old one and extends out to the other back door. We also decided it’d be a good idea to put in a new door while we were at it, and in the process of doing that, we had to remove some drywall in the kitchen. So now, we have a new deck, new ramp, new door, and a freshly painted kitchen. Now Daddy’s starting to talk about building a new, bigger garage next year so we’ll have a place to park the handicapped accessible van in. Anyway, I’ve been enjoying cruising around in my new wheelchair, and even spent a few afternoons sunning out on our new deck.

Back in May, I went to Gillette’s to have them take a look at my back. We thought that it’d be a good idea to get me started on Botox shots (you can never start too early, right?) along my spine to try and help with my arching and spasms. X-rays were taken then, and it was then that we realized that my scoliosis was worse than we initially thought. I had my Botox shots (five shots along each side of my spine for a total of ten shots) done in July. We noticed an immediate change for the better – Much better, that is. My arching and spasms significantly decreased and we also noticed a decrease in my seizures. We don’t know for sure if that’s related to the Botox shots, but now, it has been three months, and a few weeks ago, we noticed that the effects are starting to wear off. My arching has increased, as has my spasms and seizures. We have an appointment on December 8th for the next round of Botox shots. We’ll be watching my seizures then to see if they decrease again.

In October, we returned to Gillette’s, this time to get me fitted for a TLSO brace to help correct my scoliosis. We took a second set of X-rays, and the change between May and October was HUGE. See the pictures in the photo album. My mom will also try to figure out how to upload a slideshow above the journal entry. Anyway, that appointment was kind of depressing. We had a long discussion with the doctor about how surgery is no longer a question of if, it is a question of when. There is no way I will be able to avoid surgery at this time to help correct my scoliosis. If we allow my scoliosis to progress, it can affect my respiratory system and eventually become fatal. However, we don’t want to do surgery for a couple more years because I’m still doing a lot of growing, and if I do too much more growing after they do surgery, they’d have to do even more surgery to adjust the rod to fit my spine as it grows, which is obviously something we want to try and avoid. And it is my understanding that this is major, major, major surgery. We’re talking about a lengthy hospitalization and then a lengthy recovery afterwards. That’s something we all are NOT looking forward to, but it’s something that will have to be done eventually.

In the meantime, I have a new TLSO brace that goes from just under my armpits to my tailbone. The purpose of the TLSO brace is to try and minimize the progression of my scoliosis. The brace will NOT reverse the scoliosis, only surgery can do that. It is purple with butterflies all over it, pretty cute if you ask me. I got it about two weeks ago, and we have been working on getting me used to being in it. So far, so good. The goal is for me to wear it all the time when I’m awake. Right now, I wear it for about two hours then get an hour of “free time” before getting put back in it for another two hours. We also had to get my wheelchair adjusted so that I can fit in my wheelchair with and without the brace on.

We’ll go back to Gillette’s in a couple of months to follow up with Dr. Lonstein and see if the progression of my scoliosis has slowed down since I started wearing my TLSO brace. Then from there, it’ll be a “play by ear” thing as we try to decide when it would be most beneficial for me to have the surgery done. We don’t want to do it too soon, but we don’t want to wait too long and have my scoliosis affect my respiratory system, either. That’ll be something we’ll be watching for the next couple of months.

I also paid a visit to the dentist this summer. Tracey, one of our nurses, noticed that a tooth seemed to have broken off at the tip, and it looked like there was nerve exposure. I need to figure out how to stop grinding my teeth! That’s the second tooth I’ve broken in just over a year. The dentist confirmed that a nerve was exposed, so I had another tooth pulled. I came through that with flying colors, and healed very nicely. No infection or anything. So, I got another visit from the tooth fairy. I still haven’t decided what I’m going to do with all the money I’ve been collecting from the tooth fairy and the g-tube fairy. Maybe I’ll get myself a flat screen big TV to set up in front of my crib. I’m still thinking about it.

We also have been experimenting a little with some of my medications. I got myself totally weaned off my scheduled Valium doses, and we also increased my Keppra to try and minimize my seizures. Having seizures while I’m in my TSLO brace is absolutely no fun at all, so we are trying to stay on top of my seizure management.

I’m now 37 inches tall, and weigh 24 pounds. I know, that seems pretty small for someone my age, but we all are pleased with that!

I also started a new hobby over the summer. My mom came across a story on wcco.com about another “special” boy who’s 8 years old. He and his mother started painting as a fun activity to do together, and over time, ended up with quite a collection of paintings. Their artwork can be viewed at www.marlonshands.com . That story inspired my mom to go to Dick Blick’s Art Store and stock up on paint and canvas. I’ve been painting here and there since August, and now have quite a collection myself. This past weekend, my mom finally got around to hanging some of my artwork up on our walls in the living room and dining room. I’ll see if she can upload some photos to a slideshow and post that on the website. Otherwise, come over and pay us a visit, and while you’re at it, take a look at my artwork!

As for everyone else in the house, we all are doing very well. Alex is now in high school, and Rachel is in the 8th grade. Dad has been pretty busy this Fall with his teaching job and interpreting jobs. Mom has been busy keeping us all out of trouble.

We have so much to be thankful for this coming Thanksgiving. We hope you all have a wonderful Thanksgiving. Thank you for continuing to check in on me and my family.

Love and kisses,
Sarah

P.S. Mom updated Ben’s site as well.

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