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Happy Halloween!

From Kate:


We hope everyone has a terrific Halloween this weekend. Stay safe and if you need any protection from ghosts and ghouls, know that Super Getty will be out and about keeping everyone safe. 🙂

Super Hero Collage

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Age Isn’t Just a Number

From Mark:

Hey Kate… Happy birthday!

You know what they say… Age is just a number; but once again, you have disproven what “they” say.

“They” said, “Getty has 2 years.” Thanks to your boundless love and and dedication, it’s been 5 years and counting, and she is doing wonderfully.

In this case, age isn’t “just a number.” It’s a big deal. You helped make it a big deal when you decided years ago to do everything you could to defy the odds for her.
In Getty’s case, numbers aren’t just numbers. They are an integral part of her life.

The numbers on her pulse ox show she is in good health. The numbers that go into her bipap settings, cough settings, nutrition, feed rate, temperature, and supply shipments are crucial to her well being, and you have mastered them. The numbers she says aloud in her school work are evidence that you are bringing her worlds of enlightenment and  enrichment daily.

Numbers mean a lot. They are her signposts, which stand as constant reminders of all the good and happiness you deliver her every day.

I’m proud of you. I’m sure I speak for both Getty and me when I say thank you.

Happy birthday!


In Pure Getty Fashion

From Kate:

Well Kindergarten has begun and in pure Getty fashion she has:

-Made friends almost immediately.

-Enjoys learning and writing her numbers and letters.

-Scoffs at anyone who stops reading a book.

-Squeals with any activity.

-Enjoys the routine of the day.

-Loves everything about school.

-Adores her teacher.

-Isn’t a fan of getting up in the morning, but gets upset when school is over for the day.

-IS TALKING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


I might just add to this list as we go for the year. I know there are a lot more that I am unintentionally leaving out, but you can bet our little lady is thinking Kindergarten is pretty freakin’ cool! We could not be more proud of her and the excitement she has every day to learn and to socialize is infectious.

We were able to take Getty to school a few days to first meet her classmates and also take part in a few fun activities at school. Her classmates are incredible and she loves interacting with them. I think she has a few “favorite” peers. 🙂 The attention they give Getty gives her such fulfillment. I love to watch her face as they interact with her both from home on her VGo and also at school. Their relationships are so sweet, genuine, and so kind. I hope the kids she continues to make connections with grow and blossom as the school year progresses.

Getty has been able to go to the fire station with her friends, she has been able to communicate with them and play with them both from home and at school. I know this is helping Getty grow and mature as a person. I know this is why she now has the confidence to talk to us. And that my friends is such an amazing bonus for us as her parents. SMA is a tricky situation for SO many different reasons. One is the ability to communicate.

As her mom, I have always been so desperate to communicate with Getty. I think sometimes communication can be taken for granted. A child gets to a certain age and then they communicate right? They ask for things with their words, they use their words to string sentences together, they use their vocal cords and energy to produce sounds that become words. It would be my assumption as a parent that the bonus for this ability gives a parent the benefit to know if their child needs something, if something is hurt, if they feel sick, or if they just want to tell you they love you. Mark and I unfortunately do not get that opportunity with Getty.  We rely heavily on her O2 and heart rate levels to know if she is hurting, sick and/or needs something. We are so in tune with her facial expressions. Down to a slight eye brow movement can usually tell us how she is feeling, what she is or is not enjoying, and whether she we should be concerned about anything Getty related. Isn’t that crazy? To think that our relationship of communication boils down to a slight lip movement, eye opening, and sound influx can determine what she might be thinking or needing. It is a crazy new normal we have grown to adore. But to be honest I do have days when I just want to have a conversation. I want to hear Getty’s sweet voice put together a sentence or just say a word that is somewhat recognizable.

In true Getty fashion, she “decided” to wait until I needed it I guess. 🙂 In a muffled kind of way Getty is starting to communicate. The tone, syllables, and timing are spot on. She can count out loud with us, she can read her pre-decodable books, AND we now are using the VGo in a way that we did not last last year. We are taking the mute button off during certain times of the day so Getty can answer questions and contribute to class. Ugh! I cannot tell you how awesome all of this is. Not only is she trying to communicate, not only is she obtaining the confidence and will to talk out loud, but we can see that she takes such joy in being able to do it. That is what it is all about. To be independent and feel a sense of success around her peers and teacher is so wonderful. It has to be an encouraging feeling to know that when she tries and she gets immediate positive affirmation for her hard work. So proud of her!

A wonderful man out together a video of Getty and her relationship with her class last year using her VGo. We cannot thank Larry enough for giving us a chance to introduce the VGo with whomever was interested in learning more about this incredible opportunity. Even though Getty is home for school, she is an intricate part of her class. Her classmates treat her as though she is physically in the classroom. She is challenged by her awesome teacher just as she would if she were physically there. It is a win, win for Getty.

Here is the video!

So here is to Kindergarten. It has been amazing so far and we know that there is more awesomeness to come.