So the neuro is looking at increasing Jude's Artane by 1ml a day to see if it helps with his legs/hips. We also are receiving a referral to a neurologist at Cook's that can perform the Botox injections to help with his pain and rigidness. Jude's current neuro doesn't do the injections.
We are working on figuring out the house situation with Jude and his need for the roll in shower. We have two choices which are move or remodel our currant home. Our current home is ideal and we have a great deal on it. Plus or credit is pretty shot after what happened several years ago with Jude. However, our current home presents a HUGE problem with the bathroom conversion and it's presenting to be a very large expense. There is just limited room and limited drains for the plumbing. So I am not sure what the answer is, but we are working on it.
This weekend we have 10-5 nurse time on Sat and Sunday and we have about one million things we have to cram into those hours. Emily needs school clothes and more. So we will be very busy bees this weekend. She also talked me into letting her try cheer this year. So we drop her off Sunday for her first session. I am not sure how I feel about it, but she is really wanting to try.
Overall Jude seems to still be doing well. He has been waking up everyday with seizure activity at 4am. It takes awhile for him to settle down to go back to sleep, but he eventually does. I always check his diaper when I walk in there, but it's dry. Charlotte says he likes to save it all up until about 8 and then he decides to make everything wet. He is a character!