Part One was from August 2018, when Emma had her first post-NICU surgery, getting her G-tube replaced since her stoma (tummy hole) was prolapsing. I was scrolling through Facebook one day, looking at my old photos of Emma, and I saw that one was blurred out with a "sensitive" notice on it and you had to click twice on it after an "images may be disturbing" warning popped up. I was thinking, "What the heck would I have posted for something like this to be attached to my photo!?" It was the one of Emma's stomach because her stoma had stretched out so much that it was pushing through to the outside!!! Poor baby!!! She was not much more than a year old at that time, and we definitely needed to get it taken care of. You can see that amazing photo, and read about her/our three day hospital stay, and how Michael and I had to advocate for her when the doctors thought they knew our daughter, who has very specific medical and genetic conditions, better than we did. *eye roll*
Two other big times I can think of that we advocated for her were when she first got to Michigan for her big 3D splint airway surgery, with a completely new set of staff who had never met her. I was getting frustrated and began crying when a male nurse wouldn't let me change Emma's diaper even though I felt sure that is what was making her cry. And with all her crying, she was in the bad stage of constantly passing out. When he saw me crying he said I could change her diaper, since nothing he did was working, and once she was clean she instantly calmed down. He quietly commented, "...I will make a note of that." The first few days I felt like coming to Michigan was a big mistake, but after we were there a week and we had better/nicer/ more caring nurses and met Dr. Green, we felt like we had made the right choice for our fragile daughter.
And the other time of advocating for Emma was so scary. Michael did most of that while I just stood there crying. While in Michigan, Emma had been in their pediatric ICU for 73 days, her body getting used to the larger tubing and receiving more air with each puff and breath from the ventilator. However, when we got back to Orlando, mid February 2018, they put her back in the NICU for little babies (she was eight months old at this point), since all of the nurses and doctors knew her there, but it was also where they use smaller tubing. One doctor, who never worked with Emma much before, could not wrap his head around how Emma needed the LTV ventilator instead of the "better" Trilogy vent and said the size of the tubing didn't matter. After Michael nicely argued and we pleaded for too long, he agreed he could try it (just to prove us wrong) and finally Emma's stats came down and she could breathe well again. Ugh, I can still see her tiny sweaty face looking at me, maybe because I have a picture, but I do remember sitting on the couch in the living room cry-praying that she wouldn't die after everything we had just done for her in Michigan!! *deep breaths. everything is fine. that was a long time ago*
The sad, sweaty picture isn't in that blog post, so I'll put it here. We can't forget what we have been through!! What Emma has been through!!! She's the bravest of us all. (Followed by a happy photo.)
Aaaanywayyy... I haven't even gotten to the current issue. Ironically, the current issue starts in December 2022. I was looking through old posts to see if I had anything to link back to, but considering I only wrote one post in 2023, the answer is no. And my two 2023 Recap posts for January and February that I wrote recently do not mention it because it was a doctor appointment from the month before. So.. from the tippy-top!
In December 2021, one year even earlier, before Christmas.. which I do have a blog post for.. :)
We drove up to Delaware for the second time so Emma could get her hip spica cast removed after her leg surgery, called a Bilateral Distal Femoral Osteotomy. Breaking that down it means: cutting the femur bones, on both legs, away from the center (from the knee area where she has no knee caps). She came out with Parmesan-crusted Tiny Tim legs due to lack of use for the previous seven weeks. A private company within the hospital made skinny leg braces for Emma so she could no longer hyper extend her legs since that is what the surgery was trying to prevent. They did not put in little knee caps (she was born without them- common for Meier-Gorlin Syndrome), but the doctors shortened the bones so they could move around the ligaments and her legs could finally bend down/ the "normal" way. The surgery worked well and for some time she was able to bend her "knees" down properly with barely any hyper extension. But since she gained muscle in her legs overtime and the braces no longer fit, we stopped putting them on her and she stretched out those "new" ligaments. She can still bend her leg the right way very well, at least 80 degrees in both, maybe 90 in her left leg. But she can also hyper extend them back about 45 degrees.
I called our insurance company in the Fall, to let them know that Emma needed new ones since her legs had gotten bigger, but they told me that it was not something that would be covered "because it is not medically necessary". Of course that made us really mad because they don't know Emma! They can't see her legs! They don't know that she is four years old (at the time) and can't even stand on her own.
...... 05/09/24, today I cried a bunch after reading one of the latest emails from Jeremy. I said that FL Blue "couldn't find" one of the documents that he had sent them from me from months ago and needed me to sign and resend a new one.
