Saturday, February 18, 2012

Making Friends

I've recently connected with some pretty amazing moms via Facebook as well as in person at the hospital. A big shout-out to my new buddies, especially Hilary and Celeste.

So I have to tell you all: Norah has a kindred-twin. A nurse recently asked me if I'd be interested in meeting a particular mom in the PICU (on Valentine's day, of all days). She didn't say much more than that. We tracked one another down, and began to talk. Turns out, her daughter (born less than 2 months before Norah) has almost the exact same condition. I'd explain the differences, but it would be a bunch of genetic jibberish. Let's just say that the differences are relatively minor. So I've made a new friend in Celeste as well as her daughter Ava, who live only a bit northward in Perry, UT. It's shocking how alike Norah and Ava are, especially considering the extreme rarity of their condition. It was so special to compare notes and discuss doctors, treatments, and studies. We can appreciate and understand one another's worlds in a way that so few others can.

Despite having had several desats/blue episodes, in less than two weeks, Norah is doing well. She had a wonderful Valentine's Day, receiving a boxful of valentines from her fans at the hospital. Her volunteer auntie (who I adore) puts it best, saying that Norah is like a celebrity! I close with a bunch of recent photos:

Her glow-seahorse was one of her first and favorite toys. It really helps her fall asleep.

Norah tries to eat WooWoo, a borrowed friend.

A classic Norah face.

Is a caption really necessary for this one? Maybe just to thank Des for the lovely blanket!

My little valentine.

My bumble bee ballerina.

One word: JEGGINGS!

Though I can't hear Norah's laugh, I can feel it in my heart.

Monday, February 6, 2012

Family Fun

Old-Man-Gunnell (aka Jeff) had his birthday on Sunday. We had a great mini-weekend filled with indian food, video games, geekery, and family time at the hospital. 

Sweet siblings

Harper sure loves Norah

Norah is really working on her two bottom front teeth. Her drool is out of control, and so is the cuteness!

 They decked out Norah's wagon like a parade float... complete with crown and scepter. She waved her scepter to her subjects, demanding smiles for all!

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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