Miracle Morgan: Follow up appointment tomorrow

Monday, August 12, 2013

Follow up appointment tomorrow

Tomorrow is Epilepsy Clinic with Dr. Lee and Dr. Clark. Looking forward to giving them a big thank you for helping our precious girl. I have my questions ready too. Hopefully we can continue to reduce the seizure meds because she is doing so well! Want to ask Dr. Lee why she still holds the right side of her head, what is she feeling? She also has more sensory issues. She is just nonstop active. Every week is different with her behavior, emotions, etc. is this just part of the healing process? She has always had some sensory issues, but it seems so much more so now. She just is nonstop seeking sensory input. We are trying everything they have suggested in therapy, the pressure vest, weights, deep pressure, etc. It is helping some but it is wearing me out. Again, I am thankful for her progress so far, just want to know how we can better help her get through this phase.

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Morgan's Story

Our daughter Morgan turned five in December. She was born healthy and developed normally, at first. She began having seizures at the age of two. Since then, her development has halted, even regressed. She now cannot talk. She walks, but is uncoordinated which causes her to fall multiple times a day. She rarely smiles or laughs, since she doesn't feel good.
She is an intelligent little girl that just seems to be trapped in her body right now. Doctors said that the seizures and the medicine were likely holding her back from progressing. She has been on seven to eight different seizure medicines and continues to have multiple seizures daily and nightly mostly during her sleep. The medicines were also affecting her negatively. Some of them made her hyper, some made her so lethargic she couldn't function, and some made her kind of crazy. We tried multiple treatments to try and help her such as diet, supplements, and therapy. We would see fluctuating results. All the while, she just wasn't developing or learning and continued to have daily frequent seizures.
She has undergone multiple testing and seen multiple doctors. Last year, after three days of being in the hospital with video monitoring of her seizures, she was just put on some more medication. At that time, we were told she was not a candidate for surgery as her seizures were coming from different parts of the brain.
In the last couple of months, Morgan's seizures had worsened so much, that we were having to give her the emergency treatments and even called EMS. It was no quality of life for her. We had to do something. We had been so against surgery before, but finally my husband and I had decided we were ok with it and were going to ask the doctors if it was an option now. Well, we didn't even have to ask them because when we got to the appointment, the doctors had looked over her MRI again. After studying her case with a panel of specialists, they had decided that she was now a candidate for surgery. They said they thought they could remove or disconnect most of the areas that were causing the problems.
We are praying and believing that the doctors will be able to get ALL of these problem causing areas. We are believing that ALL seizures will be gone and never return, and medication will no longer be needed. We pray for a speedy recovery with no initial temporary regression( which doctors said was possible). We also pray for total restoration and the ability for her brain to catch up and to learn and develop.

With God ALL things are possible

Thank you all so much for your prayers.
Jeananne, Billy, Will and Morgan Johnson