Good Days and Hard Days

Some days and moments are harder than others. Paxton is continuing to work hard and show progress, but it’s not always happening fast enough for him. He really is the most patient person I’ve ever known, but his speech frustrates him. He’s trying so hard and we can’t always decipher what he’s trying to communicate. It’s heartbreaking for us when we can’t guess what he’s saying. The speech app helps, but doesn’t always have what he’s looking for. His spelling is a little garbled so he can’t just type what he’s trying to say.

Last night, he woke up about midnight with a terrible migraine. He was crying so hard I got pretty scared. After 90 minutes and administering every line of defense we have, we bundled up and started to head to the ER. Luckily, after about 10 minutes of driving the pain broke. We decided to turn around and try to get some sleep. He was able to sleep, but my anxiety kept me up. I just wish we had some answers. Hopefully in February we can get a better understanding of what happened.

Today we are taking it easy. I kept him home from school to let him sleep and give his brain some rest. Bray tried to stay home too, but the mean mom I am made him go. 😂

We are very thankful for Paxton’s progression and are staying positive. He works so hard every day. He is such an inspiration. We are adjusting to our new normal. Thanks for all the love.

Janell

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Paxton's Progress

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