I'll try to make this quick, because I REALLY want to go to bed. We just got home from SLC, playing, back to school shopping, giving the kids a chance to see their dad, and of course the annual Primary Childrens visits.
We went in Monday morning for his MRI. Then we went to see his neurosurgeon, Dr. Kestle. He said that things looked good. We expressed some of our concerns. He expressed understanding although he was not sure if he could help. He made sure that we were following up with neurology, and we were the next day.
Tuesday came and we went back to the neurology clinic. We started by seeing the PA, Lynn Fuller. We gave Dylans history from square one, then continued to express our concern that things were getting worse for Dylan, that we were concerned about his seizure activity. She left just briefly and in that time we (Jeff & I)saw what seems to be occurring more frequently. He forgot a fairly common word. He described it by the box that warms or cooks food, you push the buttons, "beep beep beep, then start", that it was black at the hotel but white at home. The word was 'microwave'. It causes him frustration and us concern. The neurologist thought that his loss of memory was not due to seizure activity. His sleep is not the best...so perhaps that could be a cause. He did have his amygdala (memory & retention part of the brain) removed when he was 3, but we were taught that the brain re-wired itself with in 2 years. The neurologist agreed, but explained that because of the additional information he is learning, the more complex things his brain is doing, could be the cause of this regression...(as if the say that the memory in his hard drive cannot take much more.) Will meds help? We don't know, but we are going to try Depakote. Dr. Sakonju also ordered more tests and studies, none of which I am a fan of, but she's not going to make us do the 7 day EEG again (yet), so I think I can handle anything else. We have to follow up with her just days before Thanksgiving.
So that's what I thought about for hours on the way home. Will he get better? I don't know. Will he get worse? I don't know. Were these last 2 years as good as what it will be for Dylan? I don't know. That is where we stand, now its time to kneel...
5 comments:
Melissa, you are so strong and amazing. You have no idea how much I admire you. Hang in there.. I'm always around if you ever need anything.
I admire youre strength so much. You are an amazing women. I know it's not the same...but when we had so many issues with my daughter and questioning whether she was autistic or not, it was so hard. The unknown is so scary and it was so difficult to let go of the idea in my head I had of her future. I think we have to sit back and realize there is a plan for each and every one of us, we just have to have faith. You are such an example to me. I will keep you guys in my prayers!!!
I agree, the unknown sure is scary. Just keep doing what you're doing with those kids. You are both blessed to have each other.
And I forgot to tell you before, but I really can't believe that someone told you to keep better control of your kids, b/c they were such troopers during pictures! I thought they behaved so well!!
you are in my prayers i miss seeing you!! thanks for being such a great example to me
I'll kneel too. I think about you all the time and hope and pray for your continued strength and good spirits. Life is an uphill climb, isn't it? Love you lots and lots and lots!
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