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May 05-11

Week of May 05-11

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Happy Brain Tumor Awareness month! It’s been over a month since I’ve given an update on Pat. He’s working so incredibly hard in speech therapy and occupational therapy. He no longer needs physical therapy, which is great! His swelling has gone way down in his head, which has helped his function and progress immensely. He’s able to speak in short/full sentences, though they don’t always come out the way he wants them to. He’s having a little visual-perceptual troubles yet, so he is going to try prisms in his glasses to see if it helps. He is becoming much more involved in caring for Zeke! This weekend I went out of town, and Becky came to help watch Zeke. Pat did a majority of diaper & clothing changes. He helped with feeding, cuddling, and playing with Zeke. He’s always had great instincts when it comes to taking care of children, so it’s great to see some of that shining through. Pat gets a majority of the smiles and coos :) Pat and I have been able to tag team a bedtime routine, which includes reading to Zeke. It’s definitely not perfect, but his accuracy has improved so much when he’s reading! It’s starting to feel just a little more “normal” around here as Pat’s independence improves and his sarcasm comes back. 
We still do not have approval for the IDH inhibitor for Pat’s tumor, as Sanford’s legal team is involved in obtaining the drug. Hopefully we’ll be able to get approval, as this would be the best treatment option at this time for making sure this thing doesn’t come back. We want to thank everyone again for any and all help we’ve received. Having an infant rocked our world (in a great but busy way), and it truly took a village to get us this far. Words will never do justice how grateful we are to have such a great support system!

Bonus photo attached of my 3 boys. I’ll miss this when maternity leave ends ❤️

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