I can't believe summer is almost gone, school starts in a week it came and went so fast. I have been so busy keeping up with everything that I haven't been able to update for a long time. We have had a lot going on this summer, we met with a new Neurologist at the University of Utah and he specializes in cognitive development he was really really good and we liked him a lot. He told us that with MLD it is attacking the frontal lobe of the brain and so he said that the MLD is causing what they call Frontaltemporal Dementia and gave me some numbers to call so that I can get some more help with Jaren and his care. He goes in on Friday for a Neuropsych evaluation and that will give us a baseline to where he is right now, and we can watch the progression a little better. It is a 4 hour test and he is going to be so overwhelmed and exhausted I don't know how he is going to handle it. He also set us up with a Social Worker that knows of some things in the community that could potentially help me, but I haven't had a lot of time to call any of them. We met with a health educator that told us about a bank that we can store his DNA in so when our kids are old enought to find a spouse they can have some of the DNA withdrawn from the bank and find out what the gene is so that their spouse can be tested so their children won't be affected. We don't know yet what gene it is because we haven't been able to get that testing done yet, we have not had cooperation with that part of the testing.
I can't believe school is starting again already. RaKelle will be in 8th grade. Ashlyn will be in 6th grade and Braxton in 3rd. They are excited to start school. This is the first year I am actually ready for them to go back to school they have been fighting non stop every day I am so tired of it.
RaKelle turned 13 in June and she is definantly a teenager she woke up one day with the attitude and I am not really sure how to handle her she has been such a great kid and she still is she is just testing me. For her birthday I surprised her with tickets to the Osmond Brothers Concert, we went to dinner and then to the concert it was so fun and to see her face was so amazing. She loved it the whole time. I have to explain why I got the tickets because they are an older group, when I was pregnant with her she wasn't moving at all one day and I was getting worried I was getting ready to call the dr when Donny and Marie talk show came on and Donny sang on the show, she went NUTS she didn't stop moving until the song was over, it was cool, when she was a baby if I couldn't get her to stop crying I would just turn a song on from Donny and she would quiet down. As she got older she knew when he was singing on the radio, she had an imaginary friend named Donny and she had a doll named Donny she still has that doll to this day. He wasn't at the concert but she still loved it. She always told me she was going to marry him. It was so fun to spend that time with her and to see her face when they were singing. The 2nd generation Osmonds were also there and this is the first time they have all been on stage together since 1996 so it was really cool to see. She has been so busy with different girls camps this summer and she just spent a week in Washington with my parents and her cousins and aunt and uncle, she will be home tonight and I can't wait to see her I miss her so much.
I am sure I am missing a whole ton of stuff for updates but I don't want to bore everyone. Hopefully as soon as we get back into the swing of things with school and be on a normal schedule I will be able to keep up with the updates.
