Miracle Morgan: Long day

Monday, June 24, 2013

Long day

Today was a long day for Morgan and I both. We first had to go get Morgan's blood drawn. Her endocrinologist had ordered for her thyroid to be checked again. We had it checked last year and it was low. It was fine in January at last draw, so this is a recheck following surgery. Also, Dr. Stewart ordered some labs to check need for supplements. Morgan has had blood drawn many times before. Never, have we had a challenge like today. I had begun noticing at the last two doctors appointmtents that she was acting more anxious and crying when we went. Today, she was the same way, but very, very upset and crying loudly when we entered the lab. It was challenging and difficult to watch her be so upset, but it really shows that she is aware now of what is going on. Before, she would cry when they poked her but never knew what was going on until then. Today, she knew where she was and what was going on. So hopefully no more lab work for a long time. Then, she had therapy after this. After getting calmed down, she did very well. She continues to communicate with the pictures. After an hour of working with speech and OT, she gets PT. She was very tired by this time and didn't really want to participate. She wouldn't stand still to work with the PT. I told the PT that Morgan has really enjoyed jumping on the trampoline. She also seems to be very sensory seeking lately. The PT had the idea of putting ankle and wrist weights on her for sensory input. Great idea! Morgan was instantly calm and worked with the PT another 30 minutes. As for me, this was a long day on top of being up until midnight last night. No, not because of Morgan(she actually has been sleeping through the night, Praise The Lord). I was up cleaning out my closet. I have noticed having so much more energy now. Most likely for two reasons. First, I get a solid 7 to 8 hours of sleep a night now instead of waking up every hour or so to check on Morgan(like when she was having seizures all night long). Secondly, I have had a ton of bricks lifted off of me. I realize now how much the sadness of before really weighed on me and drained me so much. Of course, today I am not so energetic after this long day, but that is ok, because I am happy that Morgan is doing so much better!

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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