Monday, January 17, 2011

Before the temperature drops

I'm enjoying calmer days at home.  RR is safe in the hospital and happy to be there.  He usually derives a sense of safety knowing he can not hurt himself or others when in a psychiatric unit.  They have just started to lower one medication and it seems like it will take forever if they are really going to remove all his medications and start over. There has been some disagreement between the doctors on the value of that.  This is the first time he has ever been hospitalized close to home. (Thank you God for bringing us to Rochester)  We used to have to drive two plus hours just to visit him.

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.

Dad and AJ

AJ in his sled (Thanks Emily for the soft, sweet hat)

AJ's cousin AS on our backyard play fort

AJ and AS play in the snow

Thanks for following us on our journey.  I'm anticipating a good week.


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