Our family has been very busy keeping up with lots of moving parts in this journey we are on! Since my post in July Rayleigh has started school, is completely off Banzel, now gets real food through her feeding tube instead of formula, is on a slightly increased dose of Charlotte's Web, had family photos done, went to Disney on Ice, has in-home nursing, went on her first field trip, and is getting a wish granted by Make a Wish of Oklahoma!
Whoa.
Real quick, here are some of my favorites from this year's family photo session!
Family photos for us are bittersweet. We love love love capturing our beautiful girl in pictures to make memories that will last forever. On the other hand, it is one of those things that makes us painfully aware of her disabilities. Obviously, no one is more aware of her disabilities than Michael and I, but we are so involved every single day that it has just become life. A beautiful, meaningful life that we love belonging to. But several things in life make us think, "Dang, that was hard". For family photos, it was because we couldn't just sit her on the ground and tell her to smile, or pick any pose we like. Every single pose had to be thought through: "How will we hold Rayleigh?", "Can't do that, she doesn't have enough head control", "She's too big for that kind of pose but not able to do the older-kid kind of poses"...
Luckily, we had a wonderful and very patient photographer who would allow us to get in poses we typically do with Rayleigh or ones I found online that I thought we could do. Some worked out great, others... not so much. Nevertheless, I am so pleased with this year's batch of family photos and am so grateful to have these memories!
Now to the update: Poor little Rayleigh's body is still adjusting to the medicine wean of Banzel. It has been about 1 month since her last dose. We weaned very slowly and the wean went really well. We saw very little withdrawal, and when seizures would increase from withdrawal she would stabilize and get to her baseline after only a couple of days. She is still very tired after seizures and even when she only has a few a day, the post-seizure-naps can wreck up a day. We tried to take her to the science museum on Monday but as soon as we checked in she had her first big seizure of the day so we turned around and came home so she could get a good nap. This is not abnormal for our life.
After the final dose of Banzel we saw withdrawal symptoms come and go for several weeks. At this point, she has had 4 good days in a row so we are hopeful that she is fully stabilizing (knock on wood!). She is having less than 5 seizures on a good day, but still up to 10 of her bigger 3 minute complex partial seizures on a bad day. Two weeks ago we increased her Charlotte's Web Hemp Oil by a tiny amount, Rayleigh starts to show changes from the hemp oil at around 3 weeks so I'm excited to see what comes about - because, again, she has had 4 good days in row ;)
School is going well! Buggie currently goes half days as we don't think she could tolerate a full day of activities right now. She loves the music, art, circle time, and of course being around people!
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| First Day of School - Yes, she was asleep when we left home! |
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| But she woke up when class was about to begin! |
Her first field trip was last week and I think she really enjoyed it! It was a windy day at a Pumpkin Patch farm. Rayleigh got to pet different animals, pick out pumpkins and go on a hayride with her school friends!
I'll do a separate post on Disney on Ice and Rayleigh's Make a Wish. They are too much fun to squeeze into an update-post! I'll just leave you with this sneak peek picture from the day we met Rayleigh's sponsors!
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