Infection and What Next

Anyone who has followed my FB account knows this year that my own health has taken a bit of a nose dive. 

Whatever, I get that's life. It's painful, and I'm not enjoying it. Who does enjoy health problems, I mean really?? I have the added issue that it is reminding me of all of Aidan's suffering, at the very time of year that is the anniversary of it all... so I see all the photo and hospital updates pop up from 2 and 3 yrs ago on FB everyday. 

I won't lie, I want to be with him again. And the only reason I'm here is to take care of his brothers. And no one has the right, ever, to judge me for that. Period. And no one has a right to say whether my pain is or isn't appropriate to what they see physically. They have no idea of the full extent I'm dealing with.

Jace insisted on taking a pic while Lincoln was rewrapping my antibiotic IV port up. It's not the most flattering. ;)

The last week I've been subjected to an in my face experience of such judgements from 2 people who not only should know better than to behave that way, but are also medical professionals and have no business behaving that way professionally. All while I was only doing what another Dr had said to do, and while my condition worsened. It's still worsening. I won't go into the details on here, apparently that comes across as being depressed instead of just being honest about what is taking place. Heaven forbid I be allowed to just live my life the way I know it needs to be lived. It really was bad... 

Needless to say, I will have to find an internist if my current one can't deal with it. I see him Monday. He is very specialized, so I'm not sure he will want to take this on.

Anyway, on to other stuff...

The boys are doing okay. Some days are worse than others, but for the most part Damon is holding steady, while Jace is still only slowly declining. This is good. Aidan's was much faster, because he didn't have the Gtube or the early interventions like his brothers. Damon is having more seizures and throwing up with them just like Aidan used to, but he isn't majorly losing skills yet, which is a huge blessing.

We still haven't gotten a full handle on Jace's abdominal pain, but we are closer than we were. For once, he actually said it was, "feeling better." That's huge.

They are loving time with Sandy, learning to read (sort of) playing with toys, doing crafts and art projects, drawing and coloring and writing, playing their wii, and of course being distracted from the pain with the iPad. It does wonders for that, but can have some negative side effects I really have to watch out for. I had downloaded kids tube onto their pads at one point, but had to keep reporting videos for bad language and really inappropriate behavior. So I got so frustrated I deleted it and put such strict restrictions on their pads that Netflix freaked out and stopped working. 

Jace has had some very personal spiritual experiences that I've been able to witness. :) For Jace, that's big. He's my boy that avoids anything religious like the plague, frankly. hahaha

Currently they are playing with hole punches, scissors, crayons, and contraction paper, as I type. I've only had to keep them from climbing on my counters 11 or so times now...  :)