2 Day PCMC Trip

It was a killer.

I mean seriously. The boys overheated. For me, that's all I have to say, and I know exactly what all that means. Seizures, vomiting, major meltdowns... all while other people think it's just us being idiots. We had ice packs. Couldn't keep up with the heat, they melted too fast and didn't freeze fast enough even though we had dry ice.

My Celiac issues weren't helping. I kept going into sensitive overdrive because they had construction going on in the hospital. Gluten is in glue and carpet, etc. as well as cheap toilet paper and paper towels. Basically, on trips like these, I'm swimming in gluten even though I'm not eating it, so I get just as sick.

But back to the trip itself.

The boys are used to one appt, two tops. There were several on each day. Another reason to be grouchy and uncooperative. Hospitals cause major sensory overload with the noise and especially lighting. The freakin' lighting!!!

We met with all their specialists there and then also had Jace's first swallow study done... probably his last... I thought it was the lamest, biggest waste of time ever... and his eyes checked, as much as the poor guy could anyway. Lexi and I have hilarious memories of Jace fighting with the eye Dr. They weren't having anything of each other. And Jace pushed Lexi what seemed to be nearly up to the ceiling in the exam chair. hahaha I swear, I haven't giggled so much since Aidan passed.  Jace has always been my comic relief. He's got such a 'tude... and it can be so frustrating... and endearing... and funny.

As we move forward with the plan of action for their care, Damon is being added to comprehensive care. We are reducing some visits with certain specialists as the Comprehensive Care Unit takes over. They are all still in the loop, but it helps alleviate some of the bulk and overlap.

Jace and Damon have had more diagnosis added. LGS among them. Life is weird. I never thought I'd see that on their paperwork too. Things are still popping up on their blood work that shows issues, but nothing really helpful for genetics. Just enough, they keep going because they know something is there. Jace's kidneys are still showing bad numbers. They have from infancy. No one has ever done anything about it, just made lame excuses... most Drs here are so callous with special needs children. So grateful for the Drs we have for them from PCMC. It took moving from one pediatric center to another Dr, then when he refused to take Damon as a newborn, I had to choose another center. I found a Dr that LISTENED and PAID ATTENTION and ACTED with referrals for specialists. Did the answers come right away? No, of course not. It's not usually like that in these complex medically fragile situations. But they are slowly unraveling. And one day, we will have the answer. Dr Botto has assured me. I believe and trust him. I believe and trust the boys other specialists as well. 

After Damon saw the shoes I came up with to fit around Jace's sensor, he wanted some of his own. So I let him pick his out. :)