I'm going to start with the great news first! Jacob has managed to regain his ability to not only get up the slide outside but go down all by HIMSELF! He is still very unsteady but he can do it! We put the slide in our kid pool and he loves it! He likes playing in the pool and squirting the hose. There is no safe area when he has that! It's so much fun to see smile and hear his laugh!
Last week we went to two baseball games and he had a blast! Our neighbors took us to the second game as a gift to Jacob for his First Communion and Confirmation. I am so glad he has his cooling vest! He was very wiped out at the end of the first game but recovered well. There was a very nice couple behind us at one of the games and saw that we had 4 kids and mentioned how busy that is (they have 4 themselves though all grown). Then they saw me tube feeding Jacob and we ended up talking about what he has. They were so sweet and at the end of the game, they went and got him a baseball as they saw he was sad he did not get a foul ball. Lots of fun and we left with a happy and very tired boy!
I emailed the Neuro's nurse today just to see if she had any idea on when the results of his video EEG would be in. At the hospital, we were told a couple weeks. She called me back and had the results already! I was shocked! She said the Neuro has been very busy but made time to go through the reading. The good news is that there were NO epileptic charges which means no seizures were detected! I am thrilled that we do not have to add a new med and that the one he is on is still working well to control his seizures. The results were abnormal. No surprise there. The results showed the presense of diffuse generalized slowing. That is consistant with his diagnosis of Batten Disease. The nurse looked up his last video EEG which was this past Jan. I had not realized it was so recent. That one was also abnormal with the generalized slowing but she was unable to tell if it had gotten worse. For those of you who have never seen test results from an EEG, they are impossible to read! I'm glad I did not get to watch the screen during the test itself as doing so drives me bonkers (but is addicting to watch! LOL). My guess if it has changed since then that it is a minor change. His previous EEG before the January one was in March of 2008 and that one was normal as was the one before that. That is just one of the ways that shows how horrible this disease is and that it does not take much time to see a decline. I am so thankful there was not a significant change. God is wonderful!
Our Mr. Sleepy boy is still requiring lots of rest. He took a nap this morning that was just shy of 3 hours. That is after a full night sleep. He is just so tired. One good thing is that he knows when he needs to rest. For that nap, he came up to me with his hands folded like he was praying and asked if he could please take a nap. He should have some energy now but he is still having down time. It takes a while for the energy to kick in.
More big news is that Jacob's Birthmother, Christy, is flying here from FL on Sunday! She has never been to MI! We have been waiting for her to be able to come. Sadly it is because Jacob has gotten worse and I want her to have these memories and a chance for Jacob to show her his world. She will be staying with us and leaves on the 12th. I can't wait to see her! Jacob knows he came from Christy's tummy but cannot understand anything else. I wish his Birthfather, brother and sister could see him too. We have visited them 4 times since Jacob's birth but now is not a good time for al full visit. It is going to be very emotional as it is. Please pray for her travels and time spent with Jacob and our family. She is so special to us and we cannot thank her enough for the gift of Jacob!
