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.
Saturday, March 24, 2007
Saturday, March 10, 2007
Jackson is sick again
Lee and I were both under the weather with a pretty yucky virus last week. This week Jackson got it. He has been sick since last Sunday. He has been very lethargic and not very willing to smile. If it's anything like what I had, his little throat is killing him. And of course, any time he gets sick the vomiting gets much much worse.
He slept most of the afternoon yesterday...so by 4:30 this morning he was up and ready to go. He seemed better earlier today, but now he is coughing and gagging every 2-3 minutes. Hopefully tomorrow will be better still.
One more update on the HBOT...we were all set to start at the place in Rockford, but the lady I spoke with apparently did not quote me the correct price. So now, it's going to be about $2000 more dollars than they told me. The 1st place I called is about 45 minutes closer and only an extra $200, so we decided to go there. We are going to start on April 2. Pretty exciting!
And for the most exciting news....we got our van delivered! And construction is going to start on Monday for a temporary ramp for the house. Wooohooo!!
He slept most of the afternoon yesterday...so by 4:30 this morning he was up and ready to go. He seemed better earlier today, but now he is coughing and gagging every 2-3 minutes. Hopefully tomorrow will be better still.
One more update on the HBOT...we were all set to start at the place in Rockford, but the lady I spoke with apparently did not quote me the correct price. So now, it's going to be about $2000 more dollars than they told me. The 1st place I called is about 45 minutes closer and only an extra $200, so we decided to go there. We are going to start on April 2. Pretty exciting!
And for the most exciting news....we got our van delivered! And construction is going to start on Monday for a temporary ramp for the house. Wooohooo!!
Subscribe to:
Posts (Atom)