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Wednesday, August 7, 2013


Carter saw Neurology and GI yesterday, his last yearly appointments for the year (I hope).  Neurology is going to slowly taper him off one of his meds because he has been seizure free for a year and a half.  Phenobarbital can cause agitation in toddlers she said and if on for 10 years or more, can lower IQ points.  He has been really agitated lately, so I hope this helps.  GI fit us in because his button keeps popping out real easy.  Sometimes he pulls it out or moves too fast that I don't get to him in time.  Other times it seems to pop out for no reason.  The doctor said some kids will flex their stomach muscles to pop it out.  If this keeps happening, he said he could put a barb one in instead.  It would have no button and would be hard to get in or out.  They would sedate him a little to get it in so he wouldn't feel the pain.  We'll see how things go.  When it pops out, his food gets everywhere and is hard to get out of stuff.

I noticed a book that I really want to read by Keva Horry, the former wife of seven-time NBA champion Robert Horry.  She writes about her marriage and also her daughter Ashlyn that had 1p36 and has since passed away.  It came out in February and I just found out about it.  I would love to read more about other peoples' experiences.  I've recently been discouraged with having a special needs child, and I had a stranger approach me downtown last weekend.  She told me about the son she lost in 1995 from seizures and how she felt like I needed some encouragement.  It was very touching and so nice.  It's not often people know what to say or do, so it really lifted me up. 

1 comment:

  1. That is so sweet that, that lady approached you and said something! You're doing great with Carter!!! Totally understandable that you get discouraged, who honestly wouldn't. Let us know how he does getting of the meds!!!