We hope to share good news soon. Until then, thanks for checking the blog and of course for praying for us.
With all that said, every once in a while we still catch a glimpse of the normal Philip!
Sorry it's been so long! We don't really have much to report that has changed. What has changed is sort of discouraging. Philip has seemingly continued to regress just a little. He is using less words, is moving around less, and is very unhappy most days. Probably the aggression and anger is the hardest thing to deal with. Some days the only thing that can make him calm down is a picture of Uncle Drew on Ben's iphone, not even the bus could make him happy the other day. He kicks and screams and seems miserable. Honestly, I have avoided posting on the blog because this has been somewhat of a hard time for me. It's hard to be transparent. Waiting is not easy, especially when I watch my boy declining. It's hard to remember that the boy we see right now, the angry one, is really not our Philip. It's hard not to take it personal when he wants nothing to do with me. If I ever thought I needed to take one day at a time in the last year, the present time trumps all those. I am praying the opportunity to start the diet comes soon. Please pray for our family right now. Please pray for Philip that he knows calm and is not in pain that he can't communicate. Please pray for me that I'll be patient and seek God's strength and grace each day. We still know God is with us. On good days (where we only have 2 or 3 meltdowns) we enjoy the day. On bad days, I cry a little but still enjoy the good parts of the day. Philip still seems to be enjoying school and I am thankful for that. Mrs. Gaylee, Philip's teacher, must have super powers! :) He did have fun the other night at Uncle Drew and Uncle Mitchell's graduation party. Drew graduated from graduate school and Mitchell from undergrad. He had so much fun though, and was so over-stimulated, that he cried and screamed for hours when he had to go to bed.
We hope to share good news soon. Until then, thanks for checking the blog and of course for praying for us. With all that said, every once in a while we still catch a glimpse of the normal Philip! Comments are closed.
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Philip & Joyanna's Story
December 17, 2009 -
August 25, 2018 Philip's memorial slideshow and funeral service can be viewed by clicking on the "Philip" tab at the top of this page. You can read more about Joyanna's story by clicking on the "Joyanna" tab at the top of this page.
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March 2024
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