Yesterday we had our check-up for Jeremy with his wonderful Neurologist who acts as his whole Doctor most times. She has seen Jeremy since we moved to WA & he was only 4 months old. She has been there for the very first seizure to telling me yesterday how rare Mr. Jeremy is on post. I knew he was a special little guy but apparently Madigan at the moment is not treating any other children 18 years of age or under for Sturge-Weber. He is also only 53llbs & turning 11 years old on the 27th of this month :0( He is also a little shorter then the average eleven year old due to all his medications & SWS complications. At the moment we have been able to control his seizures for almost 5 years. We have only witnessed one in the past year & that was after he was coming out of anesthesia from surgery. They said this is quiet normal & they administered his medicine via IV to stop the seizure. His Doctor has made it quiet clear yesterday that puberty is coming even though my little guy looks more like an eight year old then an almost pre-teen.
I've done my homework I know SWS affects different people in such different ways that is why it is so crazy to treat. There is NO SET pattern to expect. So the doctor wants us to prep for the worst & pray for the best. Hormones can do quiet the number on SWS patients. They can trigger all kinds of seizures that they may not have had before or they can have them start back. We just have no way of knowing if we are the rare lucky family that is able to control Jeremy's seizures as long as he is vigilant with his check-ups & medications. There is no way to know. His doctor also noticed his balance has deteriorated some & says this is most likely due to his Glaucoma /vision issues. He has little to no depth perception in his right eye but his left is 20/20. Going up & down stairs ,,curbs etc are a challenge for Jeremy. He has been on OT now since he was four years old & made a lot of progress but still is not "normal" whatever that is-lol
Anyway this is all leading up to the point of maybe getting Jeremy a full time Service Dog for his seizures & Vision. We know he could have a seizure at anytime including his sleep so a Service Dog would alert us to any changes in his body. The dog would also help guide him when the bright sun makes him close his eyes when he walks & need to hold a hand. It will give him independence from mom & dad basically. Right now the vision is the main issue as he has to a hold a hand on any type of light is bothering him. He closes both eyes not just the right so he can't see or balance. But if we are going to get him a Service Dog she would like him to be trained for seizure notification as well. It's a huge commitment of time & money. We already have two dogs we love and we would never consider giving them away. That would mean possible three large dogs in our home. I don't even know if that is possible as we are still doing research. Would a Service Dog be able to do his/her job with other dogs in the home?? Lots of questions remain to be answered. I am sorry for rambling but I am trying to sort it all out in my brain. Blogging helps with that. Cost is another issue. We have four boys & I stay at home. How do we possibly come up with the kind of money I am seeing listed on the Service Dogs sites to pay for his dog?
Anyway , if anyone out there who is reading this has any information or firsthand knowledge I would greatly appreciate the help. Thanks for listening to me ramble. Here is a picture taken yesterday of my sweet little guy. A wonderful volunteer from the SWS sews blankets for the kids who are in & out of the hospital a lot. She surprised us with a package yesterday. Inside Jeremy found the softest,fuzziest blue blanket ever! He took it to school with him today he loves it so much. So thank you to Miss. Anne for taking the time to make him a new blanket that he can take with him on his procedure days.It was very thoughtful & came after a day spent at the hospital getting pokes.