AJ is starting his quarterly doctor's appointments this week. We try to see most of the specialists at least quarterly. He will see the cornea specialist and they will dilate his eyes to check for any damage. EB can cause blisters and abrasions in the eye that can be very painful. AJ has not had regular problems with this and for that we are especially thankful.
AJ will also see his pain team. I am going to ask them about an anti anxiety drug to give him before bandage changes. He holds onto his bandages so tight when we try to remove them. He will take a swing at you if you are not careful. The anticipation for him seems worse than the actual pain. Last night he was almost asleep before we were able to finish up bandages changes. I found it interesting that he was too tired to fight and I was able to break a blister on his chest and drain it without any fussing. He would not have let me do that quietly had he been awake.
He does have a very raw foot. It looks bad and he is very sensitive to anyone going near it. It doesn't seem to slow him down much but I'm hoping it starts to heal soon.
The kids have been outside playing in the snow. The temps are nice today (25 degrees is nice for January in MN). Tomorrow is the big freeze with 5 degrees being the high. Tomorrow is also back to school day as they all have the day off today.
Thanks for following us on our journey. I'm anticipating a good week.