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Heading Back

From Kate:

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?


Our Pulmo Is Catching On To Us

From Mark:

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’s Dizzy!!

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!


Every Single Step, People are Making a Difference!

From Kate:

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!



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