Saturday, February 28, 2009

Finally home.

I’m home and doing lots better. I was in the hospital seven days. The long 7.5 hour ride home was grueling. We had to stop about 6 times to adjust me in the seat, give me pain meds, feed me, and just stop to rest for a few minutes. The trip was pretty cold and windy, but we made it home okay. I was really hot, though, because Mom overdressed me, and I was still running a lo-grade temp.

I’m now in a hospital bed at home. I’ve been up in my chair once for about two hours. I’ll be up in my chair again later today. Dad needs to learn how to use the Hoyer lift to get me in/out of my chair when Mom goes back to work next week.

I’ve managed to get some of my homework done today. I also beat my Dad at Tiger Woods Golf. I hate sandtraps and cliffs over the ocean.

I get my stitches out next Tuesday. I think the itching will probably go away after that. The dressing isn’t as big as it used to be, so I don’t have to endure too much pain while Mom changes it every other day. Sunday is the next change. I’m sure it’ll go a lot easier and faster. When I get my 3.5” drive out, I’ll upload a picture of my cousins that visited me from Iowa last week, and my back. It’s not that gross, really.


Thursday, February 19, 2009

My Surgery

Feb. 19, two days after surgery:

Hi everyone. Just letting you know how my surgery for spinal fusion went. Doctor Lyon at Milwaukee Children's Hospital split me down the back from base of neck to tailbone, inserted lots of stainless steel hardware, including some rods, and straightened out my back. My scoliosis was making my Cerebral Palsy all that much worse, and I think the CP was doing the same for the scolio.

Anyway, I have stitches that look like how Grandma used to truss up a Thanksgiving turkey, and I'm all puffy in my face and hands. I had to have a few transfusions for blood loss, but they're putting a lot of liquids back in me to make sure I don't become too dehydrated. I've had two therapy sessions already, and the therapist hopes to have me sitting up later today. We'll see how that goes. It's pretty painful right now to just even lift my arms, let alone roll over with help or even to sit up.

Mom and Dad have been with me through it all, and we're even making more detailed plans for my Trek to Bay Cliff in June.

If you would like to share your story about your triumphs after surgery, just send me an email and my sister will look it all over and post it to my blog for you. You can send pictures, too, but make sure you have your parents permission if you are under 18. Send me a consent email, too, just to make sure.

I'll report back in a few days!!!


UPDATE (2/22/9)from my sister...
Gene has been moved out of recovery into a private room where he still gets therapy. Yesterday he sat up for an hour or so, this was painful but also a very good thing. Expecting some extra family company this weekend and Gene is looking forward to that too

Saturday, February 14, 2009


I don't have much to tell you about just yet but you can learn more about my journey at my main website.

I'm setting out on a 100 mile journey by wheelchair to help raise awareness and money for this amazing camp called Bay Cliff Health Camp that I attend for kids with special needs. They do so very much to help us get stronger both physically and mentally to help us lead lives we might not otherwise have had.

Watch here for news about my journey when it starts in June. I'd also like to use this place to tell you about companies and people that want to help us out along the way.

Thanks for stopping by.