Tuesday, March 23, 2010

A Special Day to Remember

Today is a very special day as it is the 5th anniversary of the day that Jack came home to live with us. Little did we know then that he would become the permanent fixture in all our lives that he is today.

Also, today is CAYLIE's 2nd birthday. With her vest on, she definitely acts her age, like an adult, but without it, not so much at times. She sometimes still bounds around throwing her toys and playing with Maggie. Maggie, I believe, has actually grown to like CAYLIE and enjoys play wrestling with her also.

Talk later...

Saturday, March 20, 2010

It's time

We have talked with Dr. Mikati and he and Dr. Grant (the neurosurgeon) discussed Jack's case along with their team this week. They are recommending surgery. Specifically, the hemispherectomy. We have been preparing ourselves for several weeks for this. Although a relief, at the same time, it is so scary. Putting your precious child through something so delicate and dangerous. But, we have to trust the doctors. They are supposed to be the best. We discussed with him the fact that we could not get a successful functional MRI and he said that this test is relatively new and although they like to have it, it is not absolutely required. His nurse is going to check and see if we can try one more time by having it done at Prebsy or CMC here in Charlotte. Dr. Mikati said that he "would be surprised" if his speech center had not relocated and that they (the team) would have recommended the surgery anyway.

Besides seeing about the MRI in Charlotte, our next step is to meet with both Dr. Mikati and Dr. Grant on April 6th at Duke presumably to discuss the surgery.

For a complete description of the surgery, visit this link.

For an article regarding a study done back in 2003 on the results of the surgery visit this link. It shows that the surgery is generally very successful.

Thanks to all for your continued thoughts and prayers.

Monday, March 15, 2010

Waiting to hear

Sorry it's been so long but once again we're waiting to hear from Jack's doctors. We had another disastrous trip to Duke. The functional MRI did not go well. This time, Jack was combative, probably due to the effects of a Valium that was prescribed to him to try to calm him down. Sometimes they have the opposite effect. Now we are expecting to hear this week on what the doctors want to do next. We still have not confirmed the location of the speech center of his brain. A hematologist did check him out while we were there and cleared him for surgery if that becomes a reality. The stress has been pretty bad at times but all of us are dealing with it the best that we can. We'll keep you updated...