I am fighting a war. My daughter has seizures that sneak out of nowhere and make our world come to a screeching halt. Just when you think they are gone, they come along again silently without rhyme or reason.
I am fighting another war at the same time. Just when you think you have a handle on her blood sugars they rise and fall with no rhyme or reason and bring our world to a screeching halt.
I'll continue to fight for my daughter, but just how long before it will get worked out? Will we be doing this forever? I thought we had it rough before, but this is harder than I ever imagined.
I was OK with not being able to leave Kendall with just anyone, tending to her very special needs all day, and battling her eating, administering medication, cooking, weighing, chopping the ingredients for her meals, getting her to therapies and making sure we were following through at home. I was OK with all of that...but I had some breaks.
Now it feels like there are no breaks. I can't even go in the other room without making sure I have a video monitor on her crib while she's sleeping. I can't take her for a walk without making sure I have emergency seizure meds. I can't go to a Dr.'s appointment without packing syringes, insulin, blood glucose lancets, ketone strips, blood glucose strips, glucometer, emergency seizure meds, bottles of a 4:1 ratio in a cooler. I can't sleep without waking every hour to check on her. How long can one person do this?
If you can't tell, last night and today have been hell. Her blood fluctuates way more than anyone anticipated. This morning her seizures returned. Not the long tonic clonic terrifying one (thank God) but different. And not her usual quick head drop arms fly over ones either. These are more stretched out. Less intense, but almost in slow motion. Her eyes flutter and her left arm and leg jolt up.
I called the Neurologists office where the nurse told me to give Diastat. I knew that was wrong. She was responsive. So I took it upon myself to give her 1/2 of a .25 mg Klonnopin. She fell asleep and they stopped. She woke up and they came back. None of the nurses know what to tell me. And once again, I AM NOT A DR OR A NURSE. NEVER WANTED TO BE. I just want my daughter to be comfortable. I don't care if she ever rolls over with purpose or sits or talks. I used to care about all that. But now I just want her to be like she used to be. Global developmental delays with seizures. PERIOD.
And believe it or not, throughout the hell of being stuck more than once literally every other hour, she's still smiling. Guess I need to learn a thing of two from my 16 month old.
1 week ago