We all know the old saying, “they come in three’s”. Well, we were hit, smack dab in the face with that today. Typically, this saying refers to death but thankfully, that doesn’t apply in this case. What I’m talking about is more along the lines of just bad things happening. For whatever reason, my family seems to be just like a magnet for bad things. We have, over the years, adopted the notion that anything that can happen, will happen.
I know that not the best attitude to have but it’s the reality we find ourselves in, more often than not.
Today was just one of those days where both of these sayings applied.
Lizze, in desperation, was seeking additional help from a Rheumatologist to help manage her fibromyalgia. She was basically denied access. She was informed that once she started pain management (which she did a few years ago) that Rheumatology would be a step backwards and that no one would touch her. This was pretty much a kick in the gut for her. She is in really bad shape and this was something she had been clinging to, as a possible light at the end of the tunnel.
As it turns out, once again, that light was a train, not hope, speeding towards her.
My littlest minion, Emmett John, has hit yet another fever cycle. It started on the way to OT today. His cheeks were beat red but he hadn’t yet spiked the fever. We were going to just take him home but he was very insistent that he stay and finish. he did really well but we took it easy. He has been struggling though since this afternoon. He has the beginnings of the cold sores already. His fever right now is not very high but sitting around 100 oF. History dictates that this is only the beginning of a hellashish 10 days.
Emmett is already a handful and this will just make him all that more challenging. Plus, there’s very little we can do to make this time more bearable for him.
We met with Dr. Reynolds this afternoon. Dr. Reynolds is Gavin’s primary Psychiatrist. We spent some time going over everything that is now or has been going on with Gavin.. Dr. Reynolds is still concerned about Childhood Disintegrative Disorder or CDD. I don’t really know what to think anymore. Dr. Reynolds did point something out that I hadn’t thought about, and I can’t for the life of me, explain why this hadn’t occurred to me yet.
We know that Gavin has some type of degenerative neurological disorder, whether or not it’s CDD or something else remains to be seen. However, Dr. Reynolds pointed out that not only are we seeing neurological degeneration, but also muscular degeneration as well. It hadn’t clicked with me that Gavin no longer being able to move his tongue in an upwards direction, is a muscular issue as well. While this knowledge doesn’t fundamentally change anything, it absolutely knocked the wind out of me.
It’s just one more thing to worry about.
These are the three things that really weighed heavy today. It’s worth mentioning that I’m still sick and getting worse instead of better. I’m falling ever more behind now.
Sigh….it’s time for the wonderfully disgusting elixir that is called NyQuil. Hopefully, the 30 ml’s of green liquid magic, will carry me off to a restful sleep tonight. Here’s hoping anyway 🙂