Brandon's 20th birthday had special meaning for me. When Brandon was 8 he had a swallowing accident at school. EMS was called as was I. We both raced to the school as the teachers and nurses performed CPR. By the time I got there Brandon was breathing, but had obviously aspirated on food. This led to a long year where Brandon could no longer take in food or liquids through the mouth. During the process of meeting with doctors and determining next steps, one of Brandon's doctors told me it was unlikely Brandon would live until age 20. This was devastating to hear, especially for a mom trying everything for her son to be as healthy and happy as possible. I took Brandon to several specialist to ask about this prognosis and those I consulted did not agree or disagree with this doctor's opinion. I decided to ignore the prognosis and move on. But it has been in the back of my mind for 12 years. So, it was especially sweet to celebrate Brandon's 20th birthday this year and even more special because Brandon is healthy and happy right now.
We then moved on to Christmas. Brandon was very excited because we had planned to spend the two weeks he is off from school in Dripping Springs with me. He was ready for Christmas break and a little mom time. Plus, Brandon still believes in Santa and he was looking forward to a Beatles Christmas. We had a great Christmas and Santa came through with those Beatles DVDs and books. Both my mom and Aunt were able to come over and celebrate Christmas. They are 91 and 92 and still happy to get out with the family. My brother Jack came in from Italy and my brother Jim was here as well. We drove around the Hill Country looking at Christmas lights, watched Christmas movies, listened to a ton of Christmas songs especially Bing Crosby and had a really nice Christmas.
Our friend Kate and Brandon
Jim and Brandon at Christmas
But we were missing Brandon's brother Patrick who is now in Iraq for the next year. We are hoping he is safe and careful. And we are very proud of all the work he does with the Air Force. Care packages will be in his near future.
A little medical update - We received the results of the sleep study. Brandon had a normal sleep night for him. He slept as normal for him until he awoke around 5:00 am. Brandon's neurologist read the sleep study results and was very surprised. Brandon did not have one abnormal breathing/sleep/apnea episode the entire night. Not one. This is surprising since Brandon has low muscle tone in the trunk of his body, has had seizures the last couple of years and frequently can have congestion. The neurologist said that it is normal to have up to five episodes in a night. That is considered normal. If he and I had a sleep study we would have at least one episode. For Brandon to have "0" episodes is actually very unusual, but good. However, Brandon did have an abnormal sleep pattern. There are several stages of sleep, This is a good overview of the stages. http://psychology.about.com/od/statesofconsciousness/a/SleepStages.htm. Brandon went through stage 1 through 4 during the night with some awake episodes which is normal. But Brandon never went into REM. Again this was a normal night for Brandon. I asked the doctor if maybe he just woke up or stopped himself from going into REM. The doctor said that was impossible and that it is the brain that decides which stage a person is in sleep. A person cannot alter those patterns. It also means that Brandon does not dream and it might explain why Brandon had no apnea. Apnea usually occurs during REM. It also means that Brandon does not organize his thoughts each night. I am going to read more about sleep patterns, but the results were interesting to me. Brandon has never had a full night's sleep since he was born and this helps explain why. AND there is really no treatment.
Brandon is also undergoing genome testing with the latest tests available in the quest for a diagnosis. The latest test will look at all of Brandon's genes to determine possible diagnosis, future diagnosis and any carrier information. I wasn't going to do any additional tests, but Brandon had more chromosome tests come back with abnormal information. After meeting with Brandon's geneticist, I decided to move forward with the testing. We won't know the results for 4 months.
As many of you know, Brandon is seizure free since May 2012. He is also off 2 of his three seizure medicines. The seizure medicine Brandon is on is Keppra. Although we like the medicine, it has no liver damage side effects and Brandon has been seizure free; there are a few side effects we are seeing. Brandon has started to pace (moving regularly) and he is grinding his teeth. In addition, Brandon is losing weight. About 2 pounds a month. Brandon had gained weight while having seizures and on the other medicines, He is now at a good weight for his size. But we will have to monitor to make sure he does not lose too much more. These side effects are all so much better than having uncontrolled seizures. I wanted to mention this in case someone is thinking of changing seizure medicines.
We are also working on Brandon's transition plan and I will have more info on this in my next post. Thats all for now.
Leah
