March has been kind of a crazy month for us. Jackson has had a lot of appointments, and still has more this coming week. We have all been sick and then all got sick again. Here are some of the highlights...
Jackson had a neurologist appointment, that was basically a waste of time. He sees Jackson apparently only for his seizures and tries his best to ignore all other neurologically caused problems that Jackson has...such as his pain and vomiting, which of course we all consider to be number one on the laundry list. After that, I called the GI in Wisconsin to see if he could begin to implement the plan we spoke about on our conference call last month. However, he has changed his mind and now wants to try baclofen instead of one of the other 2 meds we spoke about. The worry with this medication is that it relaxes the muscles and Jackson is already very hypotonic. He also mentioned if the baclofen doesn't work, he wants to try phenobarbitol. I do not want to try this for fear it will be too sedating, and it is something than can be addictive. I was given some good advice from a couple of friends and I am going to get Jackson on a wait list to see the pain team at CHW. Maybe they can do something.
His AFOs still are not right. We go back to the orthotist on Monday and hopefully they can work it out finally. Also, on Monday we are finally getting to try the Mulholland Walkabout gait trainer. I am hoping that it will work out and we can go ahead and order one for use at home. And he is having his assistive tech eval at Easter Seals on Tuesday this week. So we will be one step closer to having a communication device for him.
