today was a LONG day! we left early for austin, only to get there on time...really thought we were gonna have some time to spare. sigh. Zach was seen and certianly voiced his opinion in the matter, he wasnt happy to be there at all!! he only smiled after the exam and when the doc wasnt near him. what a silly boy!
from a genetic standpoint, we are thinking his deletion on the 22nd chromosome is a CNV,copy number variant...meaning it runs in our family somehow, so far my blood came back negative, however dad gave his blood today, we will see if his has the same deletion. zachs head was measured and its the same from the last time we were there, about 9 months ago, so this means no brain growth :( but he is making developmental gains so we will sit happy with that! she also thinks his hitting himself may be from the ears, so tomorrow when we go to the ENT i think its time to convince the doc to go on and plan this surgery, we will also need to plan to have his testicles lowered and give him a ABR while he is sedated, this is the "gold standard" hearing test. we need to see where we stand for his hearing.
after the appointment we raced back to belton to have Zach seen by a special company that was in town fitting kids for special trykes, we are hoping to get him one donated to him, after he outgrows it then we would give it to another child who needs it. he loved being on the tryke:)
by the time that was done our nurse was off duty and it was time for her to get back to the house to head home herself. if only there were MORE hours in the day...
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