3.16.19

Our oldest has really had a rough year so far. However I think the migraine medication is helping him to feel better in general. His migraine last week didn’t seem to be as hard on him, but it took a lot longer for him to recover - he slept quite a bit! He is having a sedated MRI in a few weeks so I am trying to mentally prepare for that - I know it’s going to be difficult for all of us.

Tonight he was in a silly mood - I found him sitting between his bed and the wall with about 10 pillows and blankets piled around him. He grabbed my hand and said “Gordon?” And from there we named as many Thomas characters we could come up with. He was giggling when I couldn’t figure out what he was saying. Sometimes it’s frustrates him but it always frustrates me.

I told Mike tonight that lately my heart has broken every single day. We have lots of communication and more words every single day but I still get so sad that he can’t just say what he feels. I can’t imagine how maddening that must be!

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