It is difficult to leave the house to do what I would call “regular” things. Getty’s health is such a concern that often times it is easy to forget what is going on out there in the real world.
It is clear that since Getty’s diagnosis, my perspective on life has changed considerably. Concerns I once had or “issues” I thought I had don’t seem to add up close to this; this is big! You certainly figure out very quickly who your friends are in moments like this. I can’t stress that enough. Family and friends have been the backbone to our stability. We haven’t had to make a meal in about two weeks, and we owe that all to extremely kind individuals. Phone calls, emails, and very sweet cards letting us know that they are thinking of us are so very heartwarming and kind.
I am on the inside of course, so I can’t quite understand what someone would think about our situation as a bystander, but I can see how this may be uncomfortable. I can see how it can make you look at your own life, your children, and think how on earth could a family go through this? We really want to thank those that have treated us no differently than before this diagnosis and, if anything, have genuinely offered even more love and support now that we have bigger hurdles to jump. There is a special place for you in our hearts.
I guess for people who wonder how we do it, well, you just do. This situation isn’t about us, Getty is driving this car and we are here to make sure she is safe and getting what she needs to thrive. I have had some concerned strangers tell me that I am brave for doing this. I might respond, “Doing what? Loving my child? Oh, that is certainly easy.” Then I usually follow that up with, “but this could be you or someone you know so easily. SMA certainly does not discriminate.”
Today I saw a video that completely captured what I have been feeling. This sense of knowing that SMA can become a part of any unsuspecting family was captured in this video. The Gwendolyn Strong Foundation is a non-profit organization that raises money for research, raises awareness, and provides support to families. It is named in honor of the Strong’s beautiful daughter, Miss Gwendolyn. The Strongs are an inspiration to us, and we call on them a lot for advice and guidance.
Please take a moment and watch the video. Thank you to the Strongs for putting together such a “strong” message for people to consume.
I never have been the type to dress in pink or in dresses for that matter, but I will say that since Getty has arrived, I have thrown that all out of the window. She looks extremely cute in dress and frilly things. So last night after Grammie and Papa left for the night, we played dress up.It is funny how your perspective changes when you let someone change it for you.
I have been getting questions as to how Getty eats now that she has a G-Tube. It’s pretty simple, really. Getty can still take formula orally if we choose to do so. However, oral feeds are risky because her swallow function is not 100% and formula could end up in her lungs that way. So, we got her a G-Tube.
We also got her a Nissen procedure. The Nissen does not close her esophagus. It just makes it a bit tighter to help prevent food from coming out of her stomach, potentially ending up in her lungs.
Here’s how she eats:
1. Make baby formula, as usual.
2. Pour the formula into the feeding bag. The feeding bag has a tube coming out of the bottom, which leads down to the blue box, which is a feeding pump. The pump then pumps the formula further down the tube toward Getty’s little tummy.
3. Here is the purple tapered tip of the feeding tube coming from the feeding pump.
4. Here is Getty’s G-Tube also called a “button.” It’s just a little tube that leads inside her stomach. It has a little rubber cap on it to keep it closed. The little bandages on her tummy will fall off in a couple weeks or so.
5. This is the end of a short tube that plugs directly into to the G-Tube opening.
6. Just open the G-Tube and plug the short tube in.
7. Connect the opposite end of the short tube with the purple tip of the feeding tube coming from the feeding pump.
8. Activate the feeding pump, and Getty is a happy little owl.
There’s a bit more to it, but those are the basics.
To our sweet little owl, on the eve of your 8 month birthday we want to give thanks. Thank you for your beautiful eyes and your quick wit. Thank you for being so brave in the hospital and showing your mommy and daddy what unconditional love truly is. Thank you sweet Getty for being so patient with us while we learn as much about this disease as possible so we can be your warriors and fight for the best care that you deserve. Thank you for your grace and mischievous nature. You are a gift, a gem, and our baby. Happy 1st Thanksgiving. We love you!