We are back from the US, from seeing Dr. Pauli. All I can say is that the 2 hour visit was worth the 2 day travel.
He is amazing, he spent about 30 minutes examining Fi, checking things that no doctor has ever checked, within this time he noticed everything and more than what i had noticed in the last 4 months. He then spent another hour and a half with us going through all our questions. We will return next year for sure and quite possibly even beyond that...
He said that she was huge :-))), first time anyone said that about her, he said that for her condition at this age, she was very big, but this doesn't mean anything, it will be around the age of 2 that an estimate can be made about her adult height.
She is very strong, her tone is excellent in her arms and legs. It was all good news really. He was moderately concerned about her hearing because she had the middle ear dysfunction at 2 months and because this is the most common complication. No intervention is needed, just keep on monitoring and do a behavioral hearing test around the age of 10-12 months. He was also mildly concerned about her accelerated head growth, again just monitoring is needed. He gave us lots of really helpful details, pointers and explained things in a way noone ever has... I am waiting for the write up and then will summarize my notes and list the things that he checked here.
Petite yet fierce - Ramblings of a pathologically information hungry mother about hypochondroplasia, about rearing 3 girls in a foreign country and about all the random thoughts my sleep deprived and over-stimulated brain can come up with.
This is great! My Evan is a huge hypo, also. I was surprised at his 6 yr well child visit that he had grown 3 inches. What??!! I'm sure it will slow down, but every inch means the world to us!!
ReplyDeleteHi Andrea , I hope Fi's hugeness will last long too, it's too early to know yet... £ inches in a year is massive... And yes, I know what you mean, the fight for every inch has began in our house too... Hugs, R
ReplyDeleteI just saw your comments on my blog (I am finally getting around to updating it) and I just wanted to say hi! Fiona is absolutely adorable!
ReplyDeleteThanks Jane... And really, girl, you are the biggest blog slacker in the blogging world :-) But at least your posts are of substance... Keep saying that to self...
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