A little update on sweet Ellie:
A few seconds after the first picture was taken, she had a seizure, so I took a picture (hopefully she won't hate me someday for publishing it).
It shows a little glimpse at a typical seizure for her: She stops smiling, her eyes flutter, and she smacks her lips like she's chewing. She looks away and in this case her hands still gripped the plate, but they fell downwards and I had to catch the pizza to keep it from falling on the ground (the reason for the blurry shot).
After about 15 seconds or so, she "comes back" and experiences a momentary confusion (hence the frown).
In another few seconds she was smiling again. If you didn't know what was happening, you'd find it all a bit odd, but you would probably just think she was distractible and tired.
Based on the time I spend helping in her reading group each week, I see that these seizures really do put her at a distinct disadvantage in the classroom. She misses instructions, she loses her place in her work, and she seems noncompliant in group settings. Thankfully her teacher is much calmer and more understanding than the jerk of a teacher who yelled at her during a seizure last week. Truly, kindergarten is probably the best grade for this all to happen and my biggest hope, at this point, is that we'll have it mostly under control by the time she starts first grade.
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- Ellie is tolerating her new medication much, much better than her previous one.
- I love having our happy, energetic Ellie back in the house again. I feel like the first medication made her act like I imagine a depressed 5-year-old would act.
- She is still having lots of seizures.
- We're in process of increasing her medication to a level that will hopefully control the seizures and not knock her out.
- Before her epilepsy diagnosis, she had almost completely given up sucking her thumb, but when she started on the medication from hell, she started sucking it again in earnest...even more than she had before. We just started a little bribery program to get her to stop again. After four days, I have to say that it's going phenomenally well.
- I love this sweetie girl and her new toothy smile.
A few seconds after the first picture was taken, she had a seizure, so I took a picture (hopefully she won't hate me someday for publishing it).
It shows a little glimpse at a typical seizure for her: She stops smiling, her eyes flutter, and she smacks her lips like she's chewing. She looks away and in this case her hands still gripped the plate, but they fell downwards and I had to catch the pizza to keep it from falling on the ground (the reason for the blurry shot).
In another few seconds she was smiling again. If you didn't know what was happening, you'd find it all a bit odd, but you would probably just think she was distractible and tired.
Based on the time I spend helping in her reading group each week, I see that these seizures really do put her at a distinct disadvantage in the classroom. She misses instructions, she loses her place in her work, and she seems noncompliant in group settings. Thankfully her teacher is much calmer and more understanding than the jerk of a teacher who yelled at her during a seizure last week. Truly, kindergarten is probably the best grade for this all to happen and my biggest hope, at this point, is that we'll have it mostly under control by the time she starts first grade.
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I would be thinking about getting her a 504 plan...she certainly would be covered under the american's with disabilities act at school...and you can start to get in place something to make sure that she doesn't fall behind.
ReplyDeleteShe is obviously a bright, happy child, and something like this should not keep her from reaching her full potential.
You are her best advocate, and I could not think of anyone that I would rather have in my corner than you!
xo
I am so glad that Ellie's doing better on the new medication. Very interesting to see one of her seizures captured on camera. It was definitely a little disconcerting the first time I noticed her having one the last time I visited. I am still sad that Ellie (and the whole family) have to deal with all of this.
ReplyDeleteAs a former thumb-sucker myself, I think that your bribery method is probably a better bet than soaking her thumb in lemon juice like mom and dad did to me :o)
Lara, Ellie is getting so big!!! Finding the right dose of medication is not a fun thing to go through. It took Liam a 10 day stay in the hospital before they got his right, but the bright side is they got it! The Lord gave us these amazing children for a reason. In Liam's blessing Jared said that he would be the one to make everyone in the family smile and feel love, and that is what he does as I am sure Ellie does the same for all of you!
ReplyDeleteAlways thinking of you,
Linzie
Ellie is so adorable! I am glad that her new medication is working better for her.
ReplyDeleteGood to see she is tolerating the new medicine better, but so sad she has to deal with this. Our prayers are always with you.
ReplyDeleteThank you for talking about it. It helps to understand what you are going through. I feel for your family and for Ellie. Our prayers are with your family and hope this new medication is more helpful for her!!
ReplyDeleteI'm glad to hear the new medication is a bit better. I'm also curious about your thumb-sucking bribery tactics. Please share any tips, as we are working on ditching that habit at our house as well.
ReplyDeleteI'm so glad her medication seems to be working. So sad to see those pictures of her during her seizure. I can't believe she has so many and I can't believe that terrible teacher, I'm glad you sad a thing or to to him. You guys are always in our prayers.
ReplyDeleteOh, sweet, Ellie!
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