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Elliott woke up screaming and you will never guess why

The moment I wake up, I realize the problem and reassure him that he’s not blind

For the first time since he lost his immune system

This has never happened before

Gavin and I have a really long day ahead of us

At the time of writing (12:30 am), I’m not feeling well and Emmett went to bed with a fever.

An important update to Gavin’s recent health complications

It’s never going to get better but it has gotten worse over the years

Every challenge pushes me towards the brink of insanity and yet also makes me stronger

I just need to keep trying

I’m getting worried about Gavin because he’s not healing

When I say tolerate it, I’m referring to physically tolerating it. Emotionally, he doesn’t have a say. It’s unfortunate but these have to happen in whatever manner is best.

Today’s Victory: Wanna know why I’m so proud of Gavin tonight? Of course you do…

For some reason, today infusion was taking forever and a day. It took so long that it was still going when their Grandma arrived

I had to make plans for a worst case scenario with Gavin tonight

“….. It’s easy to forget how fragile his health is because he’s been so stable this past year and a half but complacency is not something I can afford to have in this type of situation…..”