Monday, April 20, 2009

Swingbo Wheelchair

I had mentioned awhile back that we had a wheelchair on order. Since that time a new chair has come on the market, one that was brought to out attention by a friend who is in the business saw at a trade show. We put our order on hold until we could see this chair.

Today we went and met with the equipment team and had a chance to see the chair. In addition we were able to compare it side by side with the one that we already have approval for. Kurt and I both agreed that the new chair is the one we want for Karter. It make the other chair look Mickey Mouse in comparison.

Karter loved it too. Kurt drove him around in it and every time he stopped, Karter would complain. He is able to see everything around him so well. We loved a lot about this chair. For me first and foremost is that you see Karter first and then the chair. The chair is quite unassuming, it is sleek and small. It maneuvers well.

We took all the measurements for the chair and will now submit a quote and a letter to the At Home Program. Because this chair is new on the market and although a number of quites have been put through to the At Home Program, one is yet to be approved. We need your prayers that they will approve this chair and more than that will fund it fully.

We took a few pictures on Kurt's phone so you could see what the chair looks like. We will keep you updated on what the answer is.

Thursday, April 16, 2009

A Great Day!

Today was Karter's first day of the Spring session of riding. We had a month long break since the Winter session ended.

I was so proud of Karter today; he rode for the first time without the support pillow around him. Instead, he sat on the horse and with the help of the volunteers, held on to the harness and had to keep his body stable without anything to support him. He rode for over 20 minutes without complaint. By the end of the winter session, Karter would whine throughout the full ride. He obviously figured out how much work therapy was.

Here is a short video for you to see. You can compare it with the video of his first day of riding back in January.

After riding, Karter had his first haircut at an actual Barber. Up until now, I have always cut his hair. Paige has a play date this morning, so I took Karter to Daddy's Barber. Karter was so good, sat still and silent the whole time. Here is a cute shot of him.

Tuesday, April 14, 2009

And the wait continues...

Just before Kurt and I left for our time away last week, we increased Karter's medication. His seizures had increased to 5-8 a day; the most we had seen on a daily basis since before his surgery almost two years ago. In talking with the neurology team and since Karter has had a significant weight gain since January (about 7 pounds), it was agreed that we could increase his medication one more time before maxing out on it. The hope was that it would bring his seizures under better control and would give us some time to figure out the next step for Karter's treatment. Since the medication increase, Karter's seizure have decreased to 1-3 a day. Although this is an improvement, we still want to get them under control completely as in the past. (Post surgery we went three months at a time between seizures).

Today we received a call and Karter's case was presented to the Neurosurgery panel last week. They discussed the possibility of further surgery. The consensus was that there is still not enough concise evidence to make a clear decision to proceed with further surgery. The panel remains on the fence about their decision. So to help make a better educated decision, they will be sending Karter for a SPECT Scan. The procedure is explained quite well here. This will happen in about two weeks. It will be an out patient procedure. Once completed, we will repeat it a few days later to ensure that the results are consistent. At that time, the neurosurgery panel will look at the results and confirm whether or not further surgery will be something that Karter will benefit from.

As you can imagine, trying to fit in two trips into Children's Hospital in one week will be tough on Karter. It also makes our normal schedule harder to manage; between time off work and arranging care for Paige, it is always a stretch for us. We have already started to pray that things would work themselves out to be the least complicated for all of us; and for Karter, that his seizures would show quickly and the procedure would be the least taxing on him as possible. As he gets older, his tolerance for these type of procedures has become a lot less; although he always proves to be such an amazing trooper. So please remember us in your prayers as the days lead up to these appointments.

Karter will return to riding this Thursday, after a four week break. The Spring Session will go until the end of June. We have noticed such an improvement in his muscle control and are excited for this next session to begin.

Next week, we have an appointment to view another wheelchair. We will be able to compare, side by side, the two that we are interested in. That will allow us to make our final decision. The final paper work will then be sent to the At Home program for approval.

Enough for now, I will try and update a bit more later this week.