We attempted Hannah’s hearing test Friday, but unfortunately, she had fluid in her ears…we will try again another time hopefully in a month or so. Luckily they could see the fluid prior to putting her under…In the meantime, john and I still believe she can hear, how much is now the question.
We also found out more about her uniqueness. She has many traits of the “CHARGE Association” however, not some of the most major components such as coloboma of the eye (cats eye…leads to blindness), heart defects more intense than her bicuspid aortic valve (her bicuspid aortic valve is likely inherited from johns side, his mom has one too).
But her facial palsy, malformed ear, cleft and difficulty swallowing are present in CHARGE. Another difference is that most kiddos with CHARGE have a deletion of the 7th chromosome, Hannah has the 7th, but it is essentially mis-spelled. There is typically 5 million letters in a chromosome, and about 20% of her 7th is mis-spelled…so a somewhat small percentage.
Yes…our brains continue to grow as Hannah teaches us…
Thought I would share a couple of photos of Hannah from Friday and Saturday…nice and sunny outside!
John, steph & sweet baby Hannah…almost 1
No comments:
Post a Comment