Thursday, June 26, 2014

Constant diligence

This last week Kamryn saw her Dr. for a fall she had taken while we were in Idaho and some imbalance.   The fall she took was scary,  but she recovered quickly and was cleaned up and returned to playing.  Her adults were almost in tears, and fearful of what could have happened.  She was fine, we were a mess.  (Mike was not with us in Idaho, and didn't know about the fall until we came home.)  A few days after arriving home I noticed her imbalance.  I made an appointment with the Dr.  We discussed her fall,  knew she didn't have a concussion, but were a little puzzled by the imbalance.  A quick look in her ears and the imbalance issue was solved.  She has a blocked ear tube.  Hooray for simple things. 

However, the same day she saw her dentist.  No cavities, but I asked a question.  "Is Kamryn's palate smaller than her lower jaw?"  The answer was, "Yes, and I would recommend you see your orthodontist."  A week latter she was able to see the orthodontist.  He made specific notes and recommended she see someone who could see patients with these kind of issues, that can be related to heart problems.  A children's hospital.   

Children's Hospital has trained me well.  I sent a message to them and to Kamryn's primary Dr.  There are several possibilities.  One of which is the pacifier, that comforts Kamryn, is causing the muscles to shape a smaller palate.  Other ideas are her ears, her adenoids, her familial genetics (small people) and a possible unknown syndrome.  While there are no syndromes currently related to non compaction, we may help discover more about non compaction. 

So what do we do about this.  Kamryn will be seeing a Cardiac geneticist, and possibly a dental specialist.  Will we start to widen her palate any time soon.  NOOOO!  She is to young.  The point of all of this is to discover as many of her medical issues as soon as possible, so that they can be addressed when needed. 

There are days when I could kick myself for asking so many questions.  Sometimes ignorance is bliss.  However, if this can help her grow to be happy and healthy, I'll do it.  I'm so happy she is growing and changing and beginning to spread her wings.  That little "run" of hers make me giggle with joy. 

So as we approach July and August, we will have several more appointments in Seattle.  It's standard procedure to do a neuropsychology evaluation after a transplant. She will have that in July.  August is a neurology appointment and then the genetic sometime in the near future.  Kamryn doesn't have to go to  the Cardiologist until September,  she is doing very well. No issues there. Hooray. 

Please pray that this issues for Kamryn's jaw are purely structural. That the neuropsych appointment goes well and supports the services she needs. That neurology will know what and where to look for signs of non compaction among Kamryn's other systems.  She continues to have no issues with her heart.

Thank you