Monday, July 29, 2013

Weight, Tests, and Diagnosis

     Today was a well child visit for Kahsay.  I was really excited to have him weighed and measured.  He had been drinking almost all of his required ounces through the bottle and only needed to have a night drip once in a while.  He still receives all his medication through his tube and gets supplemental feedings randomly when he is having a hard time drinking the bottle.  All in all I felt very confident that he was going to have gained weight and inches.
     When the nurse put my squirmy wormy on the scale she slid it up to 20.  I was ecstatic!  BUT all too quickly began sliding it down.  All the way to 18 of all numbers.  If you are not aware yet, Kahsay has been 18 lbs. since October.  She even told me he was just a bit under 18 lbs.  Trying to hold my tears and not show her my extreme disappointment, I quickly transferred him to check his height.  Everyone lately has commented on how long he is getting.  Well after she told me that number we realized he had not even grown an inch.  I had her measure him 2 more times to come up with the same number.  Discouraged I walked back to our examination room and began wondering, "What in the world will we do now?".
   When the pediatrician came in he too just said "UGH."  However he quickly told me we were going to come up with a plan.  The plan will be to first check Kahsay's thyroid.  If that test comes back abnormal, they will put him on thyroid medicine.  This would be an easy fix.  If the test comes back normal, he will refer us to an endocrine specialist at the University of Michigan.  He began to explain that he believes we could be dealing with a growth disorder.  His first assumption is the simple growth hormone deficiency.  If this is the case Kahsay would be put on growth hormone injections.  Again he assured me this could be a pretty easy fix.  The specialist will test for many different growth disorders but the above one is the most common.
     I am so thankful for a pediatrician who is proactive and doesn't wait for things to happen.  I will take Kahsay in tomorrow to get his thyroid tested and we should get results by Thursday or Friday.  The Dr. even said if the test does come back abnormal we will try thyroid medication for 6 months.  If he does not start growing we will be referred to the endocrine specialist regardless.
     So I guess my prayer is that an answer is found quickly for Kahsay's lack of growth and that whatever the cause is would be an easy fix.  I will admit I thought for sure we were done with tests and hospital stays.  I am learning very quickly that brain injuries are very complex and effect the body in so many ways.
     Speaking of the hospital, Kahsay will have a 24 hour EEG done at the children's hospital this week Thursday to Friday.  I have no idea what to expect.  I hope they will teach me more about his seizures, what to look for, and when to be concerned.  I am a little excited to have hospital ice chips.  They are the best in town!
     I did forget to mention that at our neuro development appointment in June Kahsay was officially diagnosed with cerebral palsy also.  I was not at all surprised by this, but our neuro development doctor does not officially diagnose until 15-16 months of age.  This will be beneficial to have on his medical records.  It will help us to some day have an easier time getting any equipment we need for Kahsay.  Equipment that could eventually help him walk.  I told her in that case why don't we throw a few more labels on there also :).