It’s now 4am and sleep remains elusive. I’ve been laying here for over two hours now and I just can’t fall asleep. At least Lizze finally fell asleep.
This is actually the first night I could have actually slept through the night because the boys have slept through the night.
I’ve got so much going on in my head right now and I just can’t seem to shut it off. I’m worried about Lizze. I’m worried about Gavin. I’m worried about Elliott and Emmett. I’m worried about Christmas. Now I’m worried about what I’m going to do with the van situation.
There’s no end to the things I’m worried about.
Gavin has me absolutely terrified. He’s lost so much weight and he so easily destabilized now that we can no longer risk him making the trip to Akron Children’s Hospital for his monthly IVIG Infusions. We are going to have to start doing this at home, once a week.
I feel like we’ve hit a dead end, in regards to figuring out what’s behind his major health issues. We no longer have a direction to go in or any idea what to do next.
In the last two years, he’s lost his immune system, been diagnosed with epilepsy and developed severe Autonomic Dysfunction. Now he’s losing weight and becoming increasingly more medically fragile. This weight thing has me pretty freaked out because even though his caloric intake has increased this year, he’s still losing weight.
It’s like all we can do is watch him waste away.
My other half, Lizze, has never been this bad. Her health is continuing to get worse and we keep running into insurance problems, when it comes to finding her more help.
I’m being pulled in so many different directions, I literally don’t know what to do.
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