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Head Pod

From Kate:


Well yesterday (Thursday) was one for the milestone/memory book. Getty got to trial the Head Pod. I will do my best to describe it. Basically it is several bands that attach around Getty’s head so she can have complete control of her neck and head. Before I go any further, I need to explain that Getty has never felt this sensation. Since she is a type 1, the ability to hold her head up was never an option. When she was a tiny baby she could, but it was for tiny stints. So this is a big deal. Can you imagine never having the ability to hold your head up? Can you imagine what it would feel like to be given that ability? Well yesterday she got it. This is where I would add the word awesome. This was an awesome day. To her this was an awesome experience.


So as you can see the support to hold her head is around her forehead and what you can’t see is the support under her head. It took her a long time to realize that she was in the driver’s seat. To know she has been given this gift of independence of her neck and head was probably mind blowing but also a kind of apprehension. Slight movements here and there and then something extraordinary  happened. Getty started to move her head from left to right and up and down. It was beautiful.

Our hope is with more practice, Getty will be able to gain more movement in her neck and head.

So I got a bit of footage to watch. She was being sassy and would stop her movement every time my phone came out, but I was able to get some footage.

So here is Getty in her debut performance. Click here! 

A million cheers for Getty!!!!!!


Toothfairy….We’ve Got Two for You!

From Kate:

Getty, once again hit another incredible milestone……….she lost two teeth. Two of them on the same day, I think. 🙂

Quick rewind.

We woke up as our usual routine would dictate. Getting ready for school demands a diaper change, new clothes, and an hour long breathing treatment. As I was brushing her teeth I noticed one of her lower middle teeth was gone. Like completely gone, vanished, no where. My first instincts was, “where is the tooth?” Since Getty cannot swallow, it is easy for a tooth to be aspirated. I lightly dug my finger into her little mouth in an effort to find the missing treasure. Nothing.

I had already started her breathing treatment so my thought was if it was in there it could have already come out and didn’t notice it. But nopety, nope. This tooth was gone. I started to get kind of frantic. She hadn’t simulated any choking at all that day or night, so where the heck was it?

I decided since the tooth next to the missing one as also loose, it needed to come out. Two missing teeth would send me reeling. So I began to move it around. Gross! The feeling of pulling a tooth out is so gross. But sure enough with a little twist, it was out. A sweet little tooth. Getty’s little tooth. I coveted the little thing in my hand and I just stared at it. Another milestone, chills ran up an down my back. About that moment Angie found Getty’s first tooth. It was on the ground. It must have come flying out last night during her breathing treatment and no one noticed.

So now we have two beautiful little teeth. The gap in Getty’s mouth is so cute too. It just feels like she went from being a little lady to a bigger little lady, instantly. Where does the time go. I remember like it was just yesterday when those little pearly whites were coming in.

So here is our proud little lady showing off her little teeth.

The tooth fairy was busy that night as you can tell. She was all over the place finding the perfect gift for Getty’s efforts. She found two shirts and a Lego set Getty has been wanting. 🙂

Congratulations little owl!


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