Hope this update finds everyone doing well. Wish I could say the same for Danielle. The past 3 days or so have been pretty rough for her. To this point she hasn’t stopped seizing for over 24 hours. This started 2 days ago when she had a couple of seizures in a few hours which is pretty abnormal for her. Usually she’d follow that up w/a high temp but that didn’t happen. Instead the seizures starting coming more frequently until they are where they are at now. She has slept maybe 4 hours in the past 24 because they keep waking her up. We’ve given her all the meds we have and nothing (again) is working. Hospice is coming out today to reaccess meds so hopefully they can give us something that will stop the pattern. I stopped counting seizures sometime yesterday at 22. The night nurse said she had a break between 2 and 5:30 but as of now she’s already had 4 since then. The weird thing is that the seizures aren’t getting worse in presentation or duration just a huge increase in frequency. The worst part is that she crys through them. That is so heartbreaking! It’s the only time I can hear her vocalize and it’s when she’s crying……just heartbreaking. I have an email out to try and get ahold of one of the docs out in Boston to see what his opinion might be. I stopped taking her to our local neuro because it was more of a battle than I was willing to put up with. I wasn’t getting much involved teamwork. So hopefully someone will come up w/and idea to bring her some relief. In the meantime I will just lay in bed with her to comfort her and pray that God can lighten the load a bit.
Thanks for checking in on my princess.
With love,
Megan
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Im so sorry. I rarely pray but it is in these instances that I do and hope on all that is good that my prayers are heard. I can only hope that for Danielle and the rest of you family that God will make this peaceful in a way he sees fit for you all. I pray for her comfort and peace. Love to you all-Robyn
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We’re thinking of you all and sending Danielle many many prayers for comfort..do you guys have the distat that goes in rectally? I know a lot of families use that to break seizures…we’ve had good results for Mac with regular diazpan through his tube. I wish I had the magic answer for Danielle’s comfort…we’ll keep praying.
Love, the murray’s
http://www.caringbridge.org/visit/cormacmurray -
My prayers are with you all and especially that Danielle would have peace and comfort.
Love, Judy
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Our prayers are with Danielle and all of you. We pray that God will comfort all of you in this trying time.
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I’m so sad for Danielle and also for you. Please God give her some relief from such misery and I pray for you Megan I know you must feel so helpless and broken hearted because you can’t do anything to help her.
I’m praying, I’m praying
It’s all I can do
Ilove youAunt Gloria
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we have a prayer team at Heartland International Ministries we will add
DANIELLE name to it, please keep us inform on the progress, praying that
the LORD brings comfort to Danielle and her family. -
I read your post with a heavy heart. Megan I feel for you. I just wish there was something I could do. Continue to be strong. Know that EVERYONE is send you their love and support. Wrap your arms around Danielle and tell her that she is loved more than she knows. We are sending our love to you all.
Josh, Michelle, Michael, and Alex
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Dear Megan,
We are holding you all up in prayer! We are at a conference with the doc I think you are trying to get a hold of so I’ll ask when I see them. My thought is if Danielle is crying during the seizure it might be muscle spasms instead since seizures aren’t suppose to be painful. I will say that I have seen tears with Lindy during her seizures but I thought the tears were some sort of autonomic response. I will ask that question for you. Rectal Diastat is a good thing to have on hand if you don’t. It usually stops our Lindy’s seizures. Our thoughts and love are with you all!
Butterfly hugs,
Teryn -
Thanks Teryn. Yes I did email Charnas today. Hauer said he was going to a national conference so not to expect him to respond right away. I don’t think what she is experiencing is muscle spams, the crying comes half way through them so I think she’s scared. I noticed that if I massage her head or stroke her hair she doesn’t cry…but who knows. The Distat does not work. As a last resort today we tried it and nothing changed. As of right now she is calmer but I think she is having smaller seizures or different ones. She’s blinking an awlful lot and her left eyebrow is twitching constantly but nothing like earlier. So I don’t know if all the meds have caught up w/her or if this is just the calm before the storm again. Here’s hoping for a restful, peaceful evening! Thanks again, Megan
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Megan, I have kept you in my prayers. But I will buckle down for some double time. You are strong and that’s where Danielle gets it from. I just want you to know that if there is anything else that I can do let me know. I know I’m not good at keeping in touch, but you guys are always on my mind and in my heart. I mean that! Don’t hesitate to ask, if I can I will. high fives and group hugs!!! Penn
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Megan & Tony, I will share this latest update with Mom. I don’t even know what to say or how to try and comfort you except to let you know that we continue to lift you and Anthony and Danielle up in prayer for peace and comfort in whatever way God sees fit. We love you. Susie
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