Thursday, February 2, 2012

Norah's Progress Update

Norah is still doing great. She now loves her hearing aids! Not only has she gotten used to them, but she's really perked up and is even more socially interactive with them. They're really helping her continue to develop more than just her auditory senses.

Physical, occupational, and speech (for her oral aversion) therapies have been going well too. She tolerates a whole lot more than she used to. PT and OT are trying out some new techniques that work with her diaphragm and breathing troubles. The techniques are very hands-on and similar to those that an osteopath might use. It's very interesting and very exciting too.

I'd say her growth is like watching grass grow, but I'm pretty sure grass doesn't have downs to go with the ups. She lost a bit of weight this last week, so we've sort of started to chase her numbers. It's not fun. Along with carefully monitoring her caloric needs, we also started growth hormone therapy. We did some blood tests and had a consult with an endocrinologist. While growth hormones have never been found to enhance growth for those with skeletal dysplasias, Norah's own natural level of growth hormone is on the low end of average. I'm pretty sure that is from her mama's portion of her DNA working against her. So really, her growth issues aren't just from her condition. I truly believe that a good portion of her challenges are from inheriting my own shortness. So the growth hormone therapy will be a slow process, and we won't know for another 3-6 months if it's even doing anything. But hey, if it can get her home even a month early, these daily injections would be worth it. On the topic of growth, I realized something yesterday. At just under 19 inches, her length is still that of a newborn. Other babies look gigantic to me! I will say this though: Norah is perfect.

I've been avoiding posting about her current estimated length of stay in the hospital. With her current growth goals, she probably won't be big enough for a home vent until she's about 18 months old or so. Yes, that is a full year away. I'm hoping that before that time comes, she won't need the trach or vent... but we can only wait for Norah to "tell" us what she needs.



The PICU sure loves Norah. They helped make her half-birthday special!



Her absolute FAVORITE book



What can I say... my kids love the color orange. Jeff blames me. :)



Kisses for Piglet



The happiest kiddo to ever have graced the PICU!



Cuddle time with mama. It's so difficult to leave this face.



First pedicure courtesy of mama! Her toenails proved to be quite the moving target.

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