May 2nd, 2009

One of our SLP's wanted Kinnick to be working on something more "age appropriate".  Most of her toys light up or make noise (due to her being blind).  However, most toys that light up or make noise are directed toward younger children.  So, we're trying to focus more on shape sorting and putting together puzzles.  These are somewhat of a challenge when you can't use your vision to help.  Try blind folding yourself and put together a puzzle - not easy.  However, we have a puzzle that has textured pieces.  She's figured out how to take the puzzle apart.  We just need to figure out how to put it back together.

Last week, we seen K&C's Pulmanologist.  She wants to get a little more aggressive about weening K&C off their oxygen.  The weather is starting to get nice - summer is always better for the lungs - no colds.  So, we reduced Kinnick's O2 to 1/2 lt.  So far, she's handling it very well.  We've always kept the oxygen saturations in the upper 90's.  She said that this really isn't that good for them anymore.  She said that as long as they are saturating at 92% or higher, that would be fine.  Right now, she's saturating in the upper 90's - no different then she was on 3/4 lt.  Of course, she just came off her antibiotic for the last cold/lung crud.  So, we're hoping to keep weening her.  We'll make changes every 2 weeks as long as things go well.  She also wants us to see a Pediatric ENT in Kansas City (about 3 1/2 hours from here) to have her throat scoped again to see if they have any suggestions for her paralyzed vocal cord that continues to cause a stridor.  She ordered a sleep study for Carver due to his apnea episodes that he continues to experience while sleeping.  He typically recovers on his own within a couple of seconds.  However, a couple of weeks ago, we had the blue spell - meaning he was having a difficult time recovering from an episode.  She said that he is too old now to still be having apnea.  There are a couple of things that could be causing it.  He has very large tonsils and most likely equally large adenoids.   So, removing these may do the trick.  However, she warned me that it is possible that this won't make a difference.  His Spastic CP could be causing the problem.   The muscles don't like to work together all of the time and this could cause breathing issues like we've seen.   The sleep study will help identify what's going on - Is it Apnea?  Is it seizures?  Is he snoring a lot due to an obstruction related to the large tonsils and adenoids?  The sleep study should answer these questions.  He is scheduled for the sleep study on May 11th.  It will take about 2 weeks to get the results back.

Last, Carver is scheduled for his second CI.  The big day is May 27th!  We're really excited to get this done.  I can't wait until he has the full benefit of having both ears!