02/09/2022
So it’s been a while!!!
Life has been crazy busy, life keeps moving as much as you tell it to slow down!
We saw the doctors in Delaware, I can NOT praise them enough!! So caring, understand and insightful. We have a better laid out plan for her, her hips and her vocal cords as well as some added on testing we needed to get done. They took what we knew from research papers, explained and expanded them on a much more in-depth translation and more in-focused to Abigail. The goal is to return every year, if insurance allows. It was a fight to see them the first time but I’m hoping it will be easier now being a patient of theirs.
•The hips: we are advised to wait it out until it is completely safe to operate without compromising her airways. If we did the surgery now and the way her airways are, they would have to place a tracheotomy. She doesn’t need that regularly so we do not want to have to place one just for this surgery. Also, she does not weigh enough nor will she for a loooong while to put enough pressure to cause arthritis which as big factor we were looking to prevent. She is still walking, more of a penguin waddle walks but walking none the less! Overall, great news!
•The throat: the bilateral vocal cord paralysis she has on the left vocal cord, is an abby thing lol. It has no correlation to MOPDII, that they have seen. Obviously when your dealing with a very rare form of something new things can arise but as far as studies go, this is not in the disorder.
•The new advised plan: we have added kidney specialist to our list, a check up with the cardiologist, a new scan when doing our MRA, and the obvious follow ups with her current team of many specialist.
•In regular non medical news: she turned 3, she is now 10 POUNDS, she is 23 inches tall, she is in the process of getting her IEP (mommy is very nervous for that), she is learning more and more everyday and trying to keep up with her sister.
Overall, we are loving life and taking it one step at a time with these new adjustments with our current team. Also, making sure we soak up all the fun moments with both Abigail and Samantha!
