Yesterday

Okay, update everyone! We had a genetic clinic yesterday and met with Dr. T. She is wonderful and I can't spell her name, sorry. She thought Briar could still be seizing, as her sleep patterns are pretty messed up and she often stares off into space. She taught us that, "Open hands are happy hands." meaning we should be holding her hands open or putting something in them ALL the time. OT has already suggested this as they don't want her hands to become "sensitized" to having things in her hands. P.S. She HATES having things in her hands, she can actually drop things in her sleep. LOL Anyways, Dr. T was very positive and used the old, "Wait and see." attitude we hear so frequently. I talked about the articles we read versus parents blogs about their children. She encouraged us to "hook up" with other parents. It sounds a little sexual for me, but I guess.... ;) She also discussed some of Briar's "differences" as she doesn't like saying abnormalities. She noticed first of all, that Briar is a clone of Charles LOL. I thought that was pretty cute. She pointed out Briar's uvula (the ball in the back of your throat...why she noticed this, not sure) and that it is very small, and very much needed for pronunciation. She we will continue to work on signing to babe! She noticed Briar's posteriorly rotated ears, her deep set eyes, pointed chin, straight eyebrows, short fifth finger (which we all LOVE!!!) her pinkie only has one line instead of two like everyone else. She did comment that no one would look twice at B and probably wouldn't know she has these differences. She did say most people would notice her "floppiness" due to the hypotonia. We had a great chat and she gave us a new article to read.

In the afternoon, Osk came to visit. We won't be seeing her for a while because the health unit is focusing on H1N1 and nothing else!! She couldn't believe Briar's neck and head control (hehehe it's funny cause it's not that great, but to us it's a ten fold improvement, so I guess it is great!!) Anyways, she said I need to be "in Briar's face/personal space" and make her move even when she dazes off (which Osk does not think is a seizure) So all in all a good day. Especially when B fell asleep on me right before bed... so cute... and then woke up at 3:30 am with reflux... great LOL

So we have physio today and I will update to let everyone know how it goes! Thanks Carol for taking my child, carving pumpkins and making forts!!

Also, should we get the flu vaccine or the H1N1 vaccine? Let me know what your opinion is, I need help!!!