Tuesday, December 15, 2009

Over the River and through the woods...off to Gillette!

Roa has his Botox follow-up appointment today at Gillette with Dr. Gormley.  At this appointment, we will discuss the affects of the Botox on Roa's motor skills and discuss any changes we have seen, any ideas for the next injections, and set up the next round of botox.  On average, children with CP will recieve injections every 3-6 months. We will see what the doctor suggests for Roa.
We have been pleased with the result of the botox in our guy.  It has helped him get better sleep by relaxing his muscles, it has helped him sit with more ease and grasp objects without them flying out of his hands.  Roa seems to be tighter on the right side than his left but keeps his left thumb in more than his right.  We will mention this to the doc to see if it alters the dosing pattern.  We will also talk to the doctor about the power chair, gait trainer, trunk support vest, and possible new AFOs ideas brought up by the therapists.

Roa has begun his second week of HBOT at home and is doing fairly well.  I know,... I continuely bring up teething, but WOW!  I can't believe the molars and canines that are moving into my boy's mouth!  It does seem to impact his adjustment to the pressurization of the chamber.  We have kept up with Benedryl and I have slowed the pressurization speed on the chamber as Bryan and Roa "go up/down". 
Positive effects after a week of HBOT-  Roa is once again babbling, "Go", and "baaa" and just making more sounds.  He is also wiggly and giggly when placed on the floor after treatment.
Negative effects-  Roa is once again waking 6-8 times in the night!!  URGGHHH!  However, we don't let him nurse every time (we have started a nursing schedule and stick to it!) and Bryan usually goes in and just repositions him.  Thankfully though, Roa is waking and babbling and laughing!  Not crying and screaming!   Guess we gotta take the good with the bad on this one!

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Mom and Me

Mom and Me