I'm anxious. Tired. Just feeling overall gloomy. In about 7 hours we will be leaving for the hospital for Sophie's 24 hour video EEG. I hate staying the night in the hospital. I hate the thought of being confined to a hospital room. I hate the thought of the tears that will be rolling down Sophie's face as the leads are put on her head.
It is going to be a gorgeous day tomorrow. And we are going to miss it. And it makes me mad. Then I think of Zoey and so many other children that have long extended hospital stays. I think of all the gorgeous days they miss. It is not fair.
But we are suppose to be grateful that there are hospitals for our children to go to...to become well. And I am grateful. Just sometimes, there are so many more mixed emotions that go along with it. But, between all of Sophie's hospital visits and all the testing, nothing has made her better. She continues to have seizures everyday. We are now at 600mg of Banzel (we increased to 500mg last Wednesday and 600mg yesterday). Her seizures are not any better. Maybe even a little worse. They are longer. Lasting up to 10 seconds per seizure. But she does seem to have a bit more clarity when she is having a good moment. It doesn't make any sense.
It is hard for me to let go. To know that I have no control. I just try to do my best in getting Sophie the best medical treatment possible. But ultimately I must leave things up to Him. To enjoy all the great things that Sophie does do and not dwell on the medical issues. But it is hard. It is hard watching your child suffer.
So if anyone is in the area and has any desire to come by and say hi...we will be there...just give us a call on our cellphones. We will be counting down the minutes until we get to enjoy some of the gorgeous weather that has come our way.
It is going to be a gorgeous day tomorrow. And we are going to miss it. And it makes me mad. Then I think of Zoey and so many other children that have long extended hospital stays. I think of all the gorgeous days they miss. It is not fair.
But we are suppose to be grateful that there are hospitals for our children to go to...to become well. And I am grateful. Just sometimes, there are so many more mixed emotions that go along with it. But, between all of Sophie's hospital visits and all the testing, nothing has made her better. She continues to have seizures everyday. We are now at 600mg of Banzel (we increased to 500mg last Wednesday and 600mg yesterday). Her seizures are not any better. Maybe even a little worse. They are longer. Lasting up to 10 seconds per seizure. But she does seem to have a bit more clarity when she is having a good moment. It doesn't make any sense.
It is hard for me to let go. To know that I have no control. I just try to do my best in getting Sophie the best medical treatment possible. But ultimately I must leave things up to Him. To enjoy all the great things that Sophie does do and not dwell on the medical issues. But it is hard. It is hard watching your child suffer.
So if anyone is in the area and has any desire to come by and say hi...we will be there...just give us a call on our cellphones. We will be counting down the minutes until we get to enjoy some of the gorgeous weather that has come our way.
7 comments:
Hoping for a quick, painless 24 hours! We'll be sending positive thoughts your way!
By now I guess you're settled in at the hospital. Hope the next 24 hrs goes by quickly and you're rewarded with some positive results and another beautiful day to enjoy outside tomorrow with the girls.
Love,
Barb
I wish you luck on the 24 hours ahead. Katelyn and I will be in the same situation next Monday...how are we going to survive 24 hours with our girls attached to the EEG electrodes? I am trying to figure out how to keep her entertained and distracted long enough to keep the electrodes on, yikes. Let us know how it goes.
(((((hugs)))))
If we lived close I'd come visit....
I am so sorry that you are having to go through all of this. It's beyond frustrating when these medications that we put so much hope into actually make things worse!!! I just hate it! What kind of seizures is Sophie having now? I'm assuming they are no longer spasms (and that the hypsarrthmia is gone)? When does that transition happen, because Reagan's about to turn 2 and she's still having the spasms/hypsarrthmia. As always, I'm praying for you and Sophie!! Hope everything went smoothly with the EEG.
Thinking of you & Sophie, Elaine...I hope the EEG is going alright.
Elaine~ I am sorry to hear that she is having more seizures on the new med! I know it is so frustrating! My heart goes out to you all! Sophie is always in my prayers! I hope the EEG and hospital stay goes smoothly!
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