The medicine is called Vigabitrin or Sabril. It's time to learn the name since Mermaid will be taking it for about 6 months. it comes in a little foil pouch and I mix it with a little water each day to dose Mermaid morning and night. It's only good for 24 hours. She has been taking increasing dosages of Vigabitrin while tapering off of ACTH. But even the miracle drug from Canada has it's downside. Mermaid has had a lot of rapid eye and head movement. She seemed confused. She forgot how to nurse...surely she couldn't have lost her appetite. Eating was really the only skill she had left on track.
She wouldn't respond to the breast, but could manage the bottle. That's how I know she only drank 3 oz. in about a day. Her neuologist told me to hot foot it over to her pediatrician to see if Mermaid needed hospitalization again. Fortunately, she didn't look "septic" or "toxic." Their words. The took her glucose. Tested her urine and tried 4 times for blood, but came up dry. Mermaid wouldn't give them anything. It's probably because she was dehydrated. Mermaid didn't cry at all. She just grunted once or twice and almost fell asleep as the various nurses and doctors all tried their hands at a needle search for veins beneath her chubbiness. It's just not natural to be so accustomed to poking and pain. I'm sad for her acclimation.
Ultimately, Mermaid perked up, nursed and her Vigabitrin dosage was cut in half. She has continued to nurse, but doesn't cry if she's hungry, so I have to think of it. I know I'm not currently producing enough for her and last night she accepted an additional 12 oz of formula. So far I have noticed some shaking in her right arm and head a la Parkinson's disease. She is also sleeping like a newborn. It's been a couple of months since I've seen her smile. I miss that. I guess I'm acclimating just like Mermaid because this is not making me cry either. We are absolutely doing the best that we can and I need all my energy for taking care of my family. I can't waste it on worry. I'm grateful for every day that I get to hold me sweet little one and kiss her chubby face.
5 comments:
i want to comment but am at a loss of words. i can only "imagine" what you are going thru. my heart breaks for you. mermaid is soooo beautiful. you are too. i guess i just want you to know i am thinking of you and praying for you.
I have energy left to cry, so I am... My sweet sister, I wish I lived in the city with you, so I could be a proper aunt and take care of your family. Or you. I love you so much.
I am so grateful you share your experiences here with us. How could we possibly mourn with those that mourn and comfort those that stand in need of comfort without knowing the grief exists? I will do what I can do comfort. I already mourn with you.
There is the flip side--the beautiful law of opposition. With deeper pain comes an increased capacity for joy. I am so happy Mermaid is in your family and my family. The world can never have enough red-heads in it... or pure hearts. I am so thankful for hers. Again, I love you all.
you are taking President Monson's counsel to heart. :-) You're good at that.
Thanks for all of your love ladies! Beth Ann is my ray of AZ sunshine. I'm looking forward to your visit w/ some fun dinner plans. Sumgrater lights up my life from a distance that never seems to far when we're on the phone. And Heather Anna is the bee in my bonnet buzzing good news and gratitude. I didn't mean for that post to come across as such a downer. We're adjusting and I think it's good that we don't get bent completely out of shape over every little thing. Mermaid has had more lucid focused moments and did well in her PT and OT today. I'm encouraged.
I'm glad that Mermaid's doing better, but I cried when I read your post. I wish I knew how to help.
Love,
Julianne
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