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But then there’s this… April 4, 2013

Filed under: Uncategorized — ryangrace11q @ 10:04 pm

Just a quick update…

Ryan has seen her OT twice now.  In between the two appointments she got sick with a sinus infection and yucky cough, but more importantly, went from not chewing her food to fully chewing!  Not sure what changed, but instead of mashing food on the top of her mouth, she can move it from side to side with her tongue and chew!  We are still working on her pincer grasp and getting the food from tray to mouth.  It’ll happen soon – I’m confident of that.

Ryan saw the ophthalmologist and everything is status quo.  Her right eye still turns in, but only up close, and only when her glasses are not on, so the doc isn’t concerned that it’s “vision-threatening” so we’ll see her again in August.  In the meantime, we need to get her some clip-on sunglasses for her sensitive eyes!

Today was Ryan’s 18 month well-check visit… and all was well!  She was actually seeing the doctor (whom we LOVE) when she wasn’t sick and in a fun mood!  Ryan showed  some of her tricks and we talked about all the good things like weight gain (18 lbs 9 oz) and progress… albeit slow, but progress is progress.  The doctor even decided NOT to do any shots today because Ryan has an important MRI next week and we need to keep her as healthy as possible.  I actually walked out of the office smiling!

Next week is kind of a big week…She has Help Me Grow at home on Monday and at daycare on Friday, PT on Wednesday after a Video Swallow Study to determine if everything is OK when eating (and also if daycare can start table food), and finally the most important… an MRI on her spine to check on the kyphosis in her neck and then we’re meeting with the neurosurgeon for the results.  Please keep us in your thoughts and prayers and send us good vibes (or whatever you believe in) because this is HUGE.  The condition of Ryan’s neck and the possibility of surgery is very real, very scary, and possibly life altering.  Basically, we are hoping that nothing has changed in her neck and her vertebrae is not any closer to her spinal cord.  The fact that she’s happiest moving and crawling around is a good sign, but when she is, I can definitely see that she doesn’t hold her head up like a typical kid.  A little concerning…  Sigh… Thursday is a scary day.

But then there’s this…



I mean, come the f*ck on.  How can you look at those teeny, tiny pig tails and not forget about everything else?!?!


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