July 13, 2009

Captain America Update.

This update on Rand is so long over due that I am getting complaints from friends and family! In the last entry I had just found out that Rand’s left artery was completely blocked so vascular surgery is out of the question. After discussing the situation with his doctor, the decision is to keep a close eye on the other artery and see what the rate of build up is. That will decide the next steps.

Late last fall, Rand started having “episodes” now and again. I was afraid that they were TIAs or mini-strokes. They have become more frequent (about twice a month) and the neurologist told me to call 911 whenever Rand had one. Just as we were sitting down for dinner on July 4, Captain America had another episode. We spent the next eight hours in ER where he had a CAT scan and an EKG. Both tests showed that he is not having TIAs, thank goodness, but they suspect he is having seizures. He will have an EEG this afternoon to help determine what is going on. I don’t know when we will get the results, but the doctor said that they might not give him meds to control the seizures because the side effects are so tough and he is already taking so many meds, that they are reluctant to add more. I will keep you informed via this blog. Keep your fingers crossed that it is something that is easy to control.

Rand is once again having speech therapy every week. The therapist is focusing on the speech-generating device (Max, son of Mo) that we got about a year ago. During the almost yearlong process of writing the grant, having it lost, rewriting, etc, Rand’s speech needs changed a lot. By the time Max arrived, Rand had moved beyond it in some ways and in some ways Max was beyond Rand’s ability to use effectively. For instance, it is critical that Rand be able to read and write, at least on a basic level, to use Max. He cannot do either one so Max’s strengths remain untapped. The speech therapy will continue into mid-August. If there is little or no progress with Max, then the therapist has suggested that we donate it to someone who can make good use of it. I had such high hopes for this device, but as the therapist said, Rand’s brain is now like Swiss cheese - there are holes and gaps everywhere,

We have been so busy the last few months but I can’t tell you what we have been doing! The Adapted Golf program that Rand attended went by the wayside when the sponsoring hospital was closed. Rand did participate in the Saving Strokes golf event in May. There may be another golf series starting next spring but that is a wait-and-see proposition. The Adapted Bowling series is on hiatus for the summer as is Recovering Function. His music therapy continues every week and he is doing well. Nonetheless, we seem to be on the go all the time. Captain America is doing wonderful things in physical therapy. His walking improves every session – he is walking very straight and tall, with a good, smooth gait and improved timing. Now he prefers to walk around our house using his quad-cane rather than using his wheelchair. He never ceases to amaze me.


Two weeks ago today I returned from a month in Italy and the Eastern Mediterranean. What a wonderful trip! My sister and I and two friends spent a week in Rome, then cruised to Croatia, Greece, some of the Greek islands, and Turkey. A friend and I went on to Milan for a few days before returning home. My cousin, his wife and family lived in our house during that time and really saw the Bay Area. It was great to have them here, keeping an eye on Rand and on the house. Rand is happy to have me home!

Love,
Connie

P.S. It is later in the day and the EEG went well. The technician said that she saw no traces of seizures, no evidence that there have been any! WHOOPEE!! We'll get the final report from the neurologist in the next couple of days. I'll keep you posted.