We made it through our first week of school. All in all it went pretty well. Unfortunately, Jackson is still so tired that he spends a portion of the day just lying around, even at school. We are still trying to get adjusted and figure out what hours will be the most productive for him to go. He finally got his leg braces and has been wearing them for an hour or two a day to get used to them. On the first day he could not even stand in them and now he is able to walk in them so we will be trying them for longer periods of time as the days pass. We met with a neurologist last week. Jack had an EEG to see if he was having seizures. Fortunately, the EEG was normal. We also saw the Endocrinologist and reviewed Jack's blood tests. He does have low growth hormone and will need daily growth hormone shots at some point. They don't start the hormones until at least one year after the end of treatment so we probably won't start until next summer. Until then we will just enjoy his cute 3T size. We will be doing an Adrenal test next week b/c there is some concern over his exhaustion level, which has not improved at all. Of course there is also the sleep issue that we are constantly working on. We are all very tired as we try different approaches to cure Jack' nightime wakefulness. This week Jack will continue with school, start his new speech class twice a week and go to physical therapy. We are a little disheartened by the lack in progress but will keep plugging away with therapy and hope it helps. Thanks for checking in on us, we love hearing from you!
This is a picture of Jack on his first day of school. For Halloween, he was Superman so we will post a photo soon!
Hey Guys, it is great seeing the pic of Jack at school! We are always thinking of you a lot.
The Daily’s
SUPERMAN......what a perfect outfit!! Jack is a real life Superman. Hopefully you and Wyatt had a great night on Halloween. My boys were super-heroes too, they were Batman & Robin.
Your first day of school picture is adorable. Keep on fighting Jackson, you are doing such a great job. Very happy for the “no seizures” results. Hopefully you can squeeze in some more energy, so you can start chasing Wyatt and your parents around the house!!!
Good luck in school and with your new leg braces. Practice, practice and practice some more.
Team Jackson says WHOOOOOO-HOOOOOO Jobe Family!!!!!!!
Patricia, Juan, Tommy & Nicky
Hi Milkman, GREAT school picture. I bet you will get more energy shortly, keep up the good work and know everyone thinks of you and loves you.
xo xo xo
Hey guys! We had so much fun the other night! Abby said it was the best “party” she’s ever been to! We are so very proud of Jack and everything that he has overcome...which is quite alot for such a little guy! And we don’t mind him being small...look at his dad and his uncles!!! Jack looks good with his backpack on and a big smile on his face. He’ll be moving along before we all know it! You guys take care and we’ll see you soon! Lots of love!!!
Love the school pic, Jackson. And Superman is a perfect costume for you. Libby was Tinkerbell, and Dillon a frog. Hope you got your fill of candy! Good luck with school!
what a sweet picture of jackson with his backpack and the school bus in the background. he looks absolutely ready! very impressed that he was able to walk with his braces so soon after not even being able to stand in them. good progress!! remember you guys, therapy of all kinds needs lots of time. he is going to do this. ct
Love the photo update! Truly a cutie pie!!
Hi JJ, Hope your starting to have more energy because your school sounds wonderful and filled with fun things to do and of course having new friends but if you ever want to play hooky come over to gooma’s and we will get cozy in my big bed and watch movies...hmmm that sounds like a perfect day! I luv u soooooo much, you 2 Wyatt! Gooma/Maw/grandma D