Dr Hoganson also pointed out that Finn has sloping shoulders and a slight pigeon chest which can also be a symptom of BOR and I was wondering if anyone else has this? (my hubby did claim that he had just inherited his fathers fine physique!!! 
) He also said that he would be surprised if Finn had actually suffered with Bells Palsy at birth because of the degree of facial asymmetry that Finn still has, so I feel relieved that it is connected to the syndrome and not because he was bruised and battered during delivery!
I took Finn down to our local hospital this morning as our insurance wouldn't cover the blood being drawn at the hospital in Chicago
and that's not an experience I'm looking forward to repeating. The nurses were very good but had to wrap him up like a mummy with one arm exposed because he was fighting so hard 
Then they couldn't get enough blood from one arm so had to do the other as well 
He was actually fine as soon as they gave him a whole strip of wonderpets stickers - but it's taken me quite a while to get over it! 
We have another hearing test tomorrow morning and the Genetics Dr gave me a lot of info in regards to hearing issues with BOR so I feel better prepared to ask questions in regards to the testing that's being done and how they propose to check if the hearing loss is conductive or structural.
We have another renal sonogram scheduled for the end of this month and then surgery scheduled to remove one of Finn's cysts in September. In the meantime we have requested a second opinion regarding his neck cysts as our current ENT will only remove them one at a time and I'd prefer to get everything done at once so he doesn't have to have any more General Anesthetic than necessary. I'm sure there is probably a medical reason for his reluctance to do more that one at a time but the fact that he hasn't shared this info with us and blew off the suggestion of BOR doesn't fill us with confidence. So for the first time (and I have a feeling it won't be the last!) we've stamped our feet and demanded to see someone else.
Other than the BOR though Finn is doing just great. He now has about 10 words that most people can understand and twice as many signs so every day life gets a little easier.
Hope all is well with everyone else x
