Jeremy had a great 12th birthday, he had lots of visitors and fun. Here in Oklahoma we have had over 53 plus days of temps exceeding the 100 degree mark, the hottest summer since 1939, I work for the electric company and we hit over 7 different peak days so lets say it has been hot. I made the decision to have Jeremy's birthday party at his house where it would be nice and cool. We decided on the transformer theme since it was the newest thing. We had cake, punch, ice-cream and then a pinata for the kids. I had invited the kids from respite to come over for the fun. I couldn't decide what to get Jeremy as a present and was going to put money in his savings account but that is not what a kid wants from his mom. I decided on a Toy Story ball pit, it came with 20 balls which was perfect and I knew he would love it because he loves to throw balls. I almost bought the bag of 100 balls which would mean that J would have thrown a 100 plastic balls all over my house instead of just the original 20. He treats the ball pit as a tent, he gets in it and puts toys in it. He did carry it to bed the night of his birthday so I had to convince him to leave it on the floor.
We started looking at the fact school was starting here on August 22. We had a meeting regarding Jeremy's medical issues. I wasn't comfortable in the school proposal so I held Jeremy out a week to get my thoughts together, get some issues resolved. I wanted Jeremy to start school, he loves it, his friends, he is so social and progresses. My first decision was to send him 1/2 days so when he got home the home nurse could cath him, he could rest but then it felt right to send him Tuesday- Thursday all day and he would stay home on Mondays for his day of rest. Jeremy started middle school as a 6th grader yesterday and went all day so when I got home he was sitting at the kitchen table showing the nurse all his papers and he was so excited. I went to Wal-mart to buy the supplies he needed. He had a good first day. This morning I got to get him ready and put him on the bus, we played ball until the bus came. I know it will take a few weeks for them to get use to Jeremy and for him to adjust but he does fairly well with change. He has had a fairly easy, laid back summer. We have been blessed with amazing home health nurses.
Medical wise: We did switch Urologist to Dr. Oren Miller, it was helpful to see him and he was very informative in explaining issues to me. We will start to irrigate Jeremy's bladder at night and this will help keep his bladder free of bacteria and clean. He is going to do another urodynamics study and kidney/bladder ultrasound since his first ones was done right after surgery. We did botox injections which made a huge difference in his upper motor movement, before he was so stiff he had to stand and couldn't move his legs well. If he was standing and bent his knees he would fall. It took a few days after the injections to get his comfort level back and he was climbing and now is actually building muscles which is what he needs. We have started to notice seizure activity so we repeated the EEG and it was conclusive for seizures, Jeremy has the partial seizures where he will just zone out and Dr. Miller our Neurologist says these type normally occur at night. We monitor him and over the past 3 weeks we've only noticed about 3 so we will keep charting seizure activity.
What new exciting tricks is Master of disaster up to, he is almost a full crawl with actively using his knees and he is fast he can glide across the floor in no time flat. He pulls to stand constantly, climbing into chairs, turning himself around to sit down, his upper trunk muscles are becoming very strong, he just has a few moments he's lost control. This past week he decided he would start to take a few steps around furniture so he took a few, which is huge. He's building muscles and confidence and just continues to amaze everyone and be a miracle. Jeremy has been so healthy this summer, and knock on wood his last UTI was the first of August.
Here are a few pics of his birthday fun:
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