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Celebrating the Things We Take for Granted.

From Kate:

If you think about it, our society embraces the upright. You don’t really think about it, you get up in the morning and from that moment most people spend their day, well, upright: walking, sitting, crawling, jumping, etc.

Before having Getty, I hardly gave thought to the fact that some do not have the ability to “be” upright. I never considered that being held at an angle could severely inhibit one’s ability to breathe and/or swallow.

When Getty was first diagnosed with SMA, the only aspect of SMA she was presenting at the time was hypotonia or muscle weakness. When assisted, she could sit upright with no apparent oxygen desaturation. She had no problems swallowing her own secretions or eating.

As the months passed, and well after Getty’s G-tube and Nissen surgery in November 2010, we noticed being upright was becoming difficult for her.Β  With some assistance, she could sit upright, but we were noticing that the time while upright was starting to get considerably less before she became obviously uncomfortable.

We had a few scares of severe desaturation in the month of December. Mark and I discussed Getty’s care together, like we always do, and we decided that we would no longer push her to be upright. We felt that when the time was right we would pursue the upright world for her again, but not right now.

Don’t misunderstand, the laying down world is just as exciting. The books are the same, the singing is the same, and the exercises and massages are the same. Getty just has a different perspective as maybe the upright world has. If you think about it, it really isn’t that different.

However, in my heart, I was dying inside. On some days I had no problem while on others, I felt paralyzed.Β  It didn’t phase me before because Getty was still young enough that I didn’t equate crawling with her milestones yet.

She is almost 11 months old now and other kids her age are starting to walk. So I needed to be able to grieve the fact she would never walk. It is silly, really. I know she won’t be able to walk, yet when I saw kids her age walking, I fell into a self-loathing spiral.

I hate SMA.

Then I experienced a day like today. Let me set the stage. First let me say that Mark will be posting about Getty’s new and unbelievable medical stroller called the Exomotion EASyS. It is simply amazing, so I look forward to that story.

Anyway, so today was the day. My hair-brained idea was to see what would happen if Getty was upright. How would that happen? How would she do? Will Getty enjoy the experience? Are we ready?

After lots of suctioning of saliva with the suction machine, I put Getty into her stroller. It was reclined at 180 degrees flat. The pulse oximeter was secured to her toe to let us know if any oxygen decreased and/or heart rate changed. We attached the bi-pap machine to her little nose in an attempt to keep air flowing into her lungs and to help dry and force out her secretions. We were very diligent and also very methodical about this process.

Once all the numbers were good, we started to incline her upper body by adjusting the stroller. I believe we got about 140 degrees and performed the same ritual of suction and motoring. This process of getting upright took some time and then Getty got to about 100 degrees and we stopped. We stopped and you should have seen her face. She was just beaming with delight. I took this picture after we all celebrated.

So let me explain what is going on the the picture. Getty is wearing her bi-pap mask, her neck monkey is hugging her tight to make sure she is comfortable sitting, and the pink ribbons are part of her arm slings made by Nora’s mommy, so she can have some arm movement while sitting. And that smile and tongue is all GETTY!

Here is a side view of Getty in her awesome stroller looking out the window. The chair beside her is my chair, we spent a good portion of the afternoon reading books, talking about what was going on outside and just chatting like girls do.

I love this picture most because it is so symbolic of Getty’s journey. SMA has come into our home and it has shaken our family foundation. At times it robs us of our dignity and strength; yet moments like this continue to renew our faith, give us hope, and it inspires us to push the boundaries of this disease.

When RSV season is over, hopefully in April, we will be outside that window and experiencing new things with Getty. We simply can’t wait. From Getty’s experience today, she is ready to roll!

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  • AUNTIE JAMA says:

    Wow! What a sparkling smile from our little Owl!!! Love it! Kate ~ thank you so much for sharing these very special moments with all of us by painting such an incredible picture with your words that we feel we are really there in person….we are with your wonderful family in spirit but your messages bring us in even closer! What an amazing spring & summer you all are going to have being able to take those wonderful walks with Little Getty in her incredible new stroller……the pics are so precious ~ Love all of you so much…Uncle Danny, Auntie Jama & everyone from Mt. Shasta

  • Bec says:

    Go Getty girl!!! Look at that happy and proud little face!

    I couldn’t agree more with auntie jama-the way you write Kate you bring us there, standing along side you, experiencing some of the emotion you feel.

    Bring on spring and summer for you, mark and Getty.


  • Teri Taylor, Charleston's grandma says:

    I love that you enjoyed that experience and she did too!!!! Our little Cash is enjoying being upright as well. Have you guys gotten a stander yet? Thanks for sharing your stories, I love reading them. She’s a lovely little girl.

  • Getty Owl says:

    No, but we have just asked our pediatrician to start down the road of trying to get a stander.

  • Jaime Gooden says:

    Beautiful post! While we all wish we were celebrating the standard milestones like crawling, walking, first words… SMA milestones are miracles! Other people may think we are ridiculous, but a successful attempt sitting is huge! Yay for Getty, yay for you, and here’s to more wonderful first yet to come πŸ™‚

  • Margaret Buckley says:

    Your post is beautiful– and even more beautiful, the expression on GettyOwl’s face. Such bliss!
    It’s true that there are many wonderful things about life that we just take for granted; this little Owl is giving us a lesson in enjoying the little things to the fullest.

  • Anastasia Liebler says:

    I just love that little girl!!!! I was reading your post and when I saw that picture I just gasped and got the biggest smile on my face. Christina was trying to study. I told her “You have to see this picture!” She gave me this look like ‘what the heck I am trying to focus’ and says “……..What?” I tell her it is a picture of Getty and this big old smile and all of her attention completely re focuses itself on me giving the the computer so she can take a look of that precious smile. That is EXACTLY what occers when we mention Getting in this house, every time. Just thought you would like to know. With that said, when finals week comes around we would greatly appriciate as many adorable posts and pic as you can spare. πŸ™‚ WE LOVE YOU AND CANT WAIT TO SEE YOU. πŸ™‚

  • Kate & Mark,
    Your post is so near and dear to my heart. I know exactly how you feel when you have imagined all of the things your child will do and then have to greive over knowing that they will never do them. I have a co-worker who has a son a couple of months older than Ella. While we were waiting for her test results to come back, we had a little group meeting at work. She brought her son in with her that day as it was her day off. Throughout the entire meeting I could do nothing but watch him with tears in my eyes. He toddled around the room, exploring, getting into things, and having fun. All I could think was, my poor baby will never be able to do that. SMA is terrible and unfair in so many ways. But, as you have so beautifully written about…we rejoice in the other things that they can do. Every tiny new move they make is a huge deal to us and we are lucky that we can find the greatness in these things. We actually put Ella in some legs slings this last week and couldn’t believe how her little legs were going! Something that someone else may not think is a big deal can make our hearts literally sing πŸ™‚ I am glad that you got her new stoller and hopefully it will continue to make things easier for her and able to enjoy the “upright” world a little more often.
    Prayers and love from Nebraska,

    …and I knew she would win Baby Idol!!! πŸ™‚

  • Suzie says:

    When RSV season is over, you should check out story times at the libraries. Central library has a wonderful story time and so do many of the other local branches. I love taking the girls I nanny to story time.

    Suzie from Sacramento

  • Steinunn says:

    Your girl is BEAUTIFUL!
    i am mom to almost 3 year old SMA1 girl πŸ˜‰ we live in Iceland..
    if you want i can send you password for our website πŸ˜‰
    Steinunn BjΓΆrg πŸ™‚

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