Emily has had a pretty horrible no good bad kinda week. She has been retching and gagging like crazy, non-stop. I can't imagine how horrible it must feel. :( Her lips literally turn blue when she retches so much because she can't catch her breath. Her seizures are kicked up as well. Yesterday she seized on the walk to the bus, as I was putting her on the bus, and three times on the (hour long) drive to school. By the time she got to school she was post-ictal and lethargic and grumpy. They tried to help her relax and rest, but she continued to seize off and on. She only lasted until 9:00 before they called me to come get her. :(
This morning she had one pretty big seizure, and then only a few small ones at school.
I am so tired of seizures. I hate them. I hate even more that I don't even know what is or isn't a seizure anymore. She is such a moving retching sad thing, it's hard to tell.
Our testing hospitalization on Nov. 7th can not come soon enough. Yesterday was so bad, I almost drove her to UCLA to try and get in earlier through the ER.
Did I mention that I *HATE* seizures? Boo!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
15 comments:
Lots of hugs and prayers, seizures are so horrible.
your poor girl...She has too many problems for such a little sweet thing. :(
You made me hopeful that maybe if we could get Jax in there, they might be able to help him too. These tests they are doing for Emily no one has ever mentioned to me. We are weaning Jax ketogenic diet. I don't think it ever helped seizures, but I'm still watching closely for them. He is doing this weird stare thing that I think may be a seizure. Who knows! I agree, I hate seizures!!
Sorry she's not doing well. It's the hardest thing as a parent...to see our children struggle. Hang in there, the date is coming.
Yes, seizures SUCK! Gavin has been having a rough week too, with lots of wretching, gagging and coughing and some weird seizures(?) or neurological thing going on too....sure does wear a Momma down! Hope things get better for her and you! Hugs!!!
I am so sorry for you. We don't experience the seizures but the gagging and retching. I know the seizures are worse. Praying so much that you find out something come Nov. 7th.
Major yuck on the seizures! I really hope you will find some answers soon.
Fair enough that you hate seizures. I really hope the admission gets you some helpful information.
Praying,praying that UCLA has some answers.
Poor sweet Emily.She is the second of our little buddies today that spent the better part of it gagging and retching.Awful for you all.
Hoping and praying for a better day tomorrow.
I hate them too, all of it - gagging, retching, seizures. I prayed this morning that they will stop for her, and that you can get the information and help you need in November.
So what are the doctors saying about all the nausea and vomiting? Ours try to put it off to Reagan having mito...but who knows. The nonstop vomiting/retching is miserable! The only thing worse would be to add seizures to the mix! I really feel for you. I hope (and pray) that UCLA is able to help stop those nasty seizures!
uhg! i hate that she is having seizures. I totally don't like the post-ictal stages either. Sometimes, the ycan be scary, especially if they last for a while.
Hope she is doing better today .
Seizures SUCK.
Period.
Hope things are going better!
Thanks for leaving your comment on my blog...I loved reading your blog and "meeting Peanut" :) They do have the same wheel chair - gotta love Razzelberry! :)
Alex grew out of her seizures, thankfully...I hope Emily does too.
Poor Emily! I am so sorry it's been a tough week. Seemed pretty stable for a while there.
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