So, I am faaaaar beyond slap happy at this point. I haven’t sleep since Tuesday night I think… somewhere around there. After the complete snafu that was my Wednesday and decided to continue on in to Thursday all I had in me last night was to post that little picture of Kayla. That sweet baby knows just how to crack me up and stress me out at the same time. She is obsessed with sleeping on the hard, cold tiles lately. All I can think is that it must hurt, can’t feel good and is so cold she is going to keep getting herself sick.
Anyway, I’m still not in a place where I can even begin to figure out how to describe what lead up to quick posting, no writing, that picture of Kayla yesterday, but, as I promised myself and you, I am not going to shut down, bottle things up and disappear again. That doesn’t help anyone.
This week’s snafu of choice is all about Kayla and her health issues. On the one hand I feel like we are blessed that we are not any worse off than we are, because I know others that really are in a much more difficult situation. Unfortunately, comparing the life I have to the life I expected is just as detrimental to my health as it is to compare it to anyone else’s. Honestly, in my world, one person’s definition of different or normal is another person’s weird.
Last week Kayla had her cardiology checkup for a little hole she has in her heart. It is a congenital heart defect that is common with Down syndrome and since this last appointment showed that there has finally been some progress with it closing a bit more I was fairly hopeful that things were on an upward swing. I don’t know why I continue to get my hopes up since every time I feel like I’m just setting myself up, but nonetheless, that is what I did.
Why didn’t I keep in mind that her blood tests were also taken that day and that just because they were good last year (good as in no thyroid problems, no leukemia, and whatever other variety of things they are screening for that I am half shutting out before I lose it) doesn’t mean they would be good this year.
Even then, I know things could be worse, but I also know that sometimes the situation that my darling daughter is in with her health just sucks, even if it does go hand in hand with the most amazing and stellar bundle of joy personality on the planet. So, I am taking Kayla in tomorrow morning for her next Synagis shot and to discuss where we are at with the various tests and things coming up, but a big part of Wednesday’s complete deterioration into shutdown mode was the fact that her pediatrician let me know that her thyroid is not good. I will be going to the pharmacy tomorrow to pick up a new medication (another one) for Kayla, as far as I can tell, this time for hypothyroidism.
Seriously. Why does it feel like my baby just can’t catch a break?
I don’t really expect anyone to have an answer to that one, but honestly, does anyone understand the whole thyroid issue, because it confuses me and what I read confuses me more. Some day I would really like to not have to be doing medical or mental health research just to get my family through the day.
It is what it is.