Gavin’s IVIG infusion has been a disaster so far. First of all, the supply company shorted us the needles needed to draw up his meds. I had to find a pharmacy that carried theses and was willing to sell me some without a script. Honestly, who would be buying these things without some a script? I guess I get it.… Read More
It’s been a pretty awesome weekend, at least in the big picture. The boys got to spend time with their Mom and I got to sleep. We even got to spend time with my family and have a great cookout.
Tonight the boys and I had a pizza and movie night, at Emmett’s request.
We watched the movie Pixels and ate Little Ceasars Pizza before heading to the park and exploring the Garden Center.… Read More
For the first time since Gavin lost his immune system, he’s been off IVIG for one whole week. His immunologist wanted me to withhold IVIG this past week and start up again today.
This particular infusion is going extremely fast and Gavin’s feels pretty good about that.
When it finishes, we will apply the new ointment to the infusion sites and see if that helps them heal faster.
Aside from that, my hands are tied.… Read More
It’s been an interesting morning thus far. Some of us are desperate for sleep and others among us are learning lessons the hard way.
Elliott and Emmett are driving me plum loco.
They both do things to illicit an unpleasant response from the other. They both go out of their way to push the others buttons and I’m at the end of my rope.… Read More
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Emmett’s having such a very hard time right now 😕 It’s so easy to forget that just because a child with Autism can speak, doesn’t mean they have the ability to express themselves.
Emmett has a very, very advanced vocabulary but very, very limited expressive language skills.
On days like today where it feels like we’re living from one meltdown to the next, I’m reminded of this challenge.
My sweet Emmett is not gifted in the ways of expressing his feelings or frustrations with words and indoor voices.
Asking him what’s wrong will not provide me with anything that can help me better understand what’s bothering him.
I instead have to follow the breadcrumb trail of behavioral changes and try and decode them.… Read More