We got the phone call this afternoon, heading back to Kaiser in the morning. Getty’s bi-pap machine is ready to go so they would like to monitor her for hopefully just one night, maybe two. The less the better, sickness freaks me out. So now I am packing and have become a lot smarter about what to pack. Bringing our own formula, catheters, Farrell bags, button pjs, cough assist, suction, and I know I am forgetting something but the night is still young.
Here is a sneak peek of some holiday pictures our friend and photographer Morgan took of Miss Getty. Oh, our little girl is getting so big. How did that happen so quickly?
The other day, we went to visit our pulmo post-op just to let him see how Getty was doing after her G-Tube and Nissen surgery. Just before the visit, I had been communicating with the SMA community about emergency protocols. Some had suggested getting a supply of oxygen.
We asked our pulmo for some O2.
“I’m reluctant to prescribe oxygen for home use. Some people … I prescribe it … and they use it when it’s not necessary.”
He gave a pregnant pause.
“But for you … I’ll do it.”
Eight hours later, a truck pulled up in front of our house. The driver came out and delivered two tanks of O2.
Also during our pulmo meeting, when we brought up getting a home bipap machine, he grew visibly frustrated. He explained that he was working diligently on securing the machine, that he was very upset with the supplier for not having it already, and he had been on the phone the past few days yelling at people to get our bipap.
He is learning that when it comes to helping Miss Getty, we are serious and aggressive. When we ask for something, we’ve done our homework, and there’s a good reason for it. Our pulmo is catching onto us and not only being responsive but also doing some advocacy himself.
Getty will be going back to the hospital overnight soon so she can get her new Trilogy bipap breathing machine for home use at night! While home bipap will make her lungs stronger, all the hospital trips are making her dizzy!
We continue to be amazed by the constant support for our sweet owl as well as spreading awareness and fighting against SMA. Rici, the mother of little Miss Teagan has been training for a half-marathon and will be competing next weekend. While she has been training she has also been raising money for Sophia’s Cure in honor of Getty and Sophia. We cannot thank you enough and know that you have tons of people cheering you on next weekend. If anyone is interested in helping Rici’s Quest, check it out!
Rici, Getty wanted to wish you good luck! Kisses to Teagan!
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.