New Side Bar and Updates

*I have a new side bar up!*

It has links to a few videos associated with Aidan, as well as the song that meant the most with regard to his life. He and his brothers used to watch Wreck it Ralph over and over together, and this song couldn't be more appropriate.

We had another trip to PCMC yesterday. We thought it was going to be routine, but it turned into a very depressing visit. Not only have we lost trust in one of the Drs, but we are losing the best neurologist they've ever had to a children's hospital too far away for us to follow. He's not only the best neuro they've had, he's just a really good human being. And we are crushed to see him leave. For very selfish reasons of course. We do wish him all the best with his move, new job, and new adventure.

This leaves us in a very awkward position. A new neurologist has really big shoes to fill, to meet his standards. And we haven't exactly had the greatest luck with physicians. The name of the game is herd 'em through, be as cocky as possible, and don't care. On the rare occasion you find the one who does care, you've found something you never want to let go of.

He is referring us to two different colleagues of his, and we will figure things out from there.

We are also left with the decision of what to do about the other Dr that we are no longer comfortable with. Do we try to repair the relationship, or go back to just not having a comprehensive care physician? I have to admit, I'm all for simplifying right now, because of my health. The boys are stable, and I ask the Lord for guidance daily in how to deal with their challenges. It's proven to work. And I keep getting that feeling that we need to just keep things as simple as possible, make being together a priority, and stop all this running around.

As for my own health... it's not good, and keeps getting worse. At first it was laughable. Then it was scary. Now it's just maddening. Maddening because it was totally avoidable if only Drs hadn't dismissed me and ignored my symptoms.

As we move forward with really bad prognosis of Osteomylitis, Septic Arthritis, a damaged Liver, damaged Kidneys, and now the possibility of thyroid nodules (either non or cancerous,) on top of my autoimmune diseases... we can't help but feel there is something else driving all this that hasn't been found yet. All these things are clearly linked. 

In the meantime, I'm truly being pulled in two different directions. Wanting to and feeling the need to stay with my boys and care for them and my husband (oh how I wish I could relieve his stress and lighten his load,) and wanting to and feeling the need to just let go and be with Aidan and my dad again. 

I can't have both.