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.

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