Wednesday, June 19, 2013

Changes-nine days later

Last week, things were bad.  I emailed Dr. Berry-Kravis about a rescue prescription for Drew as he weans off the Arbaclofen.  She prescribed Racemic Baclofen to help ease the transition of Arbaclofen.  I believe it has helped a little. 

He still gets very agitated and has bitten the heck out of his hand.  He is developing callouses again. 

I have been trying to stick to our schedule so he is less anxious.  He is constantly asking "What's next?"  and "You make supper pretty soon?"  Which is something he can pretty much count on me doing every day.  It brings him a sense of normalcy, I guess. 

He is still squawking and screeching a lot more and talking to himself.  He goes into his room and closes the door and hand-flaps and squawks.  I hate that this behavior has returned with such a vengeance, but at least he is not punching himself in the face anymore. 

It seems like the Baclofen gives me a little time to help him keep it together and not go directly into meltdown-mode.  We will be done with Arbaclofen in two days.  A week ago, I didn't think we'd make it.  In a few weeks, we will decide with Dr. Berry-Kravis whether to add in an SSRI like prozac or Zoloft to help with his anxiety.  I can almost guarantee that we will. 

Despite his challenges with weaning, he had a succcessful week at vacation bible school.  I admit I was worried about how it would go.  He went in easily every day, and actually dealt well with it the day that his cousin Kyle had a major meltdown and was unable to go to VBS.  Drew stood by the swinging doors that divided the worship and snack area from the stairs that led to the  classroom and craft area.  He was the door man holding the door for the adults and kids as they went back and forth between activities. 

This whole weaning process has been tough on Blake.  Like most kids with Fragile X,  they are very sensitive to others' emotions.  When Drew gets upset, it makes Blake anxious. He hits or tries to bite Drew, which only escalates things.  And of course, I get stressed, thereby increasing everyone's agitation!  Not good.  I have been trying hard to stay calm with both boys, as I know neither one can really help the situation.  I've been spending plenty of time in prayer about this and reading my bible.  Nothing encourages like it.

Overall, I feel like we are in a better place than we were last week at this time.  And hopefully next week will be even better.