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In my buggy at Pullen PArk

We have been busy celebrating a wedding with family and having a lot of fun so I am just getting around to posting an update. Gabrielle continued waking many times during the night last week and then began clustering first thing in the morning. On Friday she had 6 seizures in 10 minutes and I gave her Diastat to break the cycle. After consulting with her doctor we increased her Lamictal again and also added a bedtime dose of Klonopin to her regimen to help lessen the nighttime seizures. The Klonopin seemed to really help the first night. She slept in her bed the entire night for the first time in 2 1/2 months! I was pretty excited. I’m still seeing nightly seizures but she is able to fall back asleep and she isn’t clustering in the morning.

Last night, Gabrielle woke up at 10:30pm in a pile of vomit which could have been the result of a seizure or the virus which is currently making its way through our house. She had 2 other seizures during the night in which she started heaving but didn’t actually produce anything… I know, lovely.:) We are praying this does not become a pattern.

Gabrielle has been much sleepier this past week. Her appetite has decreased and her steps have grown more wobbly. She is having less “good” time. I sure am glad to be heading to NYU for a second opinion on Monday. We are also scheduled to be admitted to Duke,May 26th for another SPECT and VEEG. Gabrielle will probably stay about 3 days.

We continue to pray and trust in God. We know He has a plan and by the end of this month we should have a better idea of what that plan is.

Comments

  1. Hey Kelly!

    I continue to pray for Gabrielle and your family as I know how difficult this time must be for you. I am glad that the klonopin has helped provide some nighttime sleep for Gabby as well as for you. I am sorry that the side effects of the seizures/medications are having an impact on Gabby’s “good” times of the day. It is so hard to see your child struggle. I hope that your trip to NYU will finally give you some of the answers that you need. May your journey be a safe one. I would still love to get together with you sometime when the dust has settled. In the meantime, if there is anything that our family can do for you or yours, please do not hesitate.

    God Bless,

    Julia

  2. LeAnn Jackson says:

    Hang in there Kelly! When I read your post I immediately thought of the verse in Jeremiah which states, “For I know the plans that I have for you” declares the Lord “plans for welfare and not for calamity to give you a future and a hope.” We will be at Duke during the week Gabby is there so we will try to find you guys! Keep the faith!

    LeAnn

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