Monday, January 31, 2011

Counting down the days

Thursday is the day for AJ's esophageal dilatation.  They will also take a good look at his airway. I am expecting good results since he has not been having any difficulties breathing.  Last week we met with the dermatologist.  She was concerned about his increasing wounds but was happy that we are making headway with the terrible itching.

Tomorrow we see the OT to look into suggestions for bathing him.  He is outgrowing his little tub and putting him in the bath and having to unwrap him there is really difficult.  He seems to manage to tear up his skin faster that we can get it to heal. We've been resorting to bathing on the kitchen counter.  It adds to the difficulty of the whole process but it saves our backs.  For you EB families that read this; I would love to hear more about what you have found that works well.

RR is still in the hospital so we have been busy running back and forth.  He really had a tough time getting off of some of his medications.  They have started a new mood stabilizer and he is starting to show signs of improvement. For those of you that have had experience with a manic phase of bi-polar; you know how tough it can get when it is out of control - he has had pretty classic symptoms.  He spent quite a few days thinking he was President Obama's cousin.  Then he crashed and slept for a long time. Yesterday he called and said it was "Jonah" I was talking to.  I hope he can find humor in this when it is over :) I don't know when he will be discharged.  He is not stable yet but things are moving in the right direction.

It is so quiet at our home.  My sister and her boys have moved on to their new home and we are really missing them. AJ cried this morning that his cousins were not here. He ran so much with them that his little feet blistered on the bottoms. This morning he alternated crying between his feet hurting and the boys being gone.  I told him we will have to visit them this spring (I'm sure he has no idea what that means but it got him to stop crying for a bit).

AJ will have to spend time playing with his penguins!

Thanks for remembering AJ in your prayers on Thursday.  I'm also praying that RR's hospital discharge and AJ's hospitalization don't conflict.   I'm looking forward to AJ being able to eat again.  I'll also admit that I am at a loss as to how to prepare for RR's return home.  We've had many rocky roads with RR in the past and new medications will change many of the dynamics of his behavior.

I am at peace.  God has been so good to us and his grace has carried us through many good and difficult times.  I know it will be there in the future too;  Future grace!

Oh how I look forward to that day of redemption.  Don't lose sight of what is ahead!

Romans 8:22-23 (New International Reader's Version)

We know that all that God created has been groaning.  
It is in pain as if it were giving birth to a child.  
The created world continues to groan even now.  
And that's not all.  
We have the Holy Spirit as the promise of future blessing. 
 But we also groan inside ourselves
 as we look forward to the time when 
God will adopt us as full members of his family.  
Then he will give us everything he has for us. 
 He will raise our bodies and give glory to them.

I'll post again after AJ's procedure.


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