I was reminded yesterday that I haven't really updated on how Gavin is doing. Sorry about that. Gavin is one difficult child to manage. There are so many variables going on in his little body that helping him feel good and keeping him stable in often easier said that done. While, he has been a little more alert he is still having times during the day where he is completely "checked out." Even when he is alert it just not right. He is having lots of tremors and at times he is still becoming completely out of control and a threat to himself or his tubes.
We are working hard of trying to find medication to help him. It's just hard because we don't know what exactly is going on. Some of what we are seeing his central nervous system being affected by the Mito, some of what we are seeing is pain and other things are just plain old "I'm three" behaviors. Trying to figure out which one of those issues is visible at any given moment if very difficult.
Gavin's hemoglobin is back down to 6 so we should be going in this week for a blood transfusion. We will be heading down to duPont tomorrow to visit the wheelchair clinic and make some adjustments to Gavin's chair including getting a O2 tank holder, getting a larger headrest and hopefully getting a new joystick that will be easer for Gavin to maneuver even when we is very lethargic and weak.
Our meeting with the Reading Eagle went great and we had lots of fun hanging out at the house with lots of great people. Tonight Adam and I will be heading out to pick out hardware for the kitchen, firming up our choices of countertops and also siding. We will then head over to the house to begin taping the trim to prepare to paint!