First off- Kaitlyn has been doing okay!
She is still having some episodes where she stops breathing but we have been able to stop the episodes before it gets really bad. It is still mainly when she wakes up from a nap, although I was laying with her yesterday while she was napping and I was listening to her breathe and I heard the silence of her stop breathing. I looked up at the monitor and her O2 started dropping.. 99, 97, 95, 93, etc. She was completely unaware of what was happening. I tried rousing her and suctioning out her mouth and was able to get her to take a breath. The episodes don't seem to bother her. I really don't think she remembers them at all. She is never upset afterwards. I guess that is a good thing, just scary for us!
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| Lazy morning with Daddy |
We did get to enjoy the windy day on Saturday. This summer is has been way too hot to take Kaitlyn outside. Her body just can't tolerate the summer heat so we got to hang out on the porch for a little while in the breeze.
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| Enjoying the breeze |
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| Family photo- Cole is obsessed with our dog Lily! |
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| Cole loves his big sister! |
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| We found a frog friend |
Most important of all, we had lots of family time!
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| Hanging out with Gigi and Cole |
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| Playing with Pepere and Memere |
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| Daddy time |
Sunday she was pretty mad all day. We aren't sure why. It seemed as though every time we would move her position, she would get really upset like she was in pain. We did give her pain medicine and tried everything we could think of to make her feel better but sometimes it just doesn't work.
Kaitlyn's friend, Wylder (who also has NPA), has been on Keppra for awhile now and his parents said that he got really sleepy for about a week or so until his body got used to the medicine. Hopefully Kaitlyn will be feeling less groggy and fussy and more like her happy self soon!
That is one of the hardest parts- watching your child in pain or discomfort and feeling like you can't do anything about it. We keep telling ourselves that we just have to LOVE on her as much as possible and never stop trying to make her feel good. That's all we can do. The rest is in God's hands.
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| Hanging out today |
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| Our curly girl |
Thanks for the update! We're constantly thinking about you guys and praying...
ReplyDeleteDeanna and Chip, thank you so much for keeping us up to date on how Kaitlyn and Cole are doing. Looks like she had a smile on her face when she was playing with memere and pepere. I was thinking it would make me laugh too looking at her pepere and his funny face. love to you all. Aunt Nancy
ReplyDeleteJust wanted to let you know that I have been thinking of you all and saying prayers for Kaitlyn. It is so nice to see her home surrounded by the people she loves most.
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