So we lived out the nightmare. Blessedly, as we got closer to the chemicals leaving her body in the final week of November, a beacon of hope appeared. She finally stopped twitching all the time. She became calmer. She started to move her legs--crossing them, doing a flamingo-type pose, and just lifting them on her own. I saw her yawn for the first time; she started to stretch when she woke up. She also started crying . . . and when I picked her up, she stopped. She would cough slightly to get attention--again, when I patted her to reassure that I was in the room, she stopped the coughing. The muscles around her mouth moved enough to almost look like an attempt to smile. Such delight! To get any communication is such a treasure.
During the Thanksgiving break, we had about 1-1/2 weeks with very limited seizing--maybe ten a day. The residual meds were just leaving her body. We felt so hopeful that maybe the drugs were causing her seizures the entire time. But, that river of hope flowed downstream. Her seizing has since returned in full force--back to 60+/- day. Needless to say, weight gain has been a bust. At her 15-month appointment, she'd dropped to 12 pounds. You just can't shake and twitch that much and gain weight. Its like she's exercising 24/7.
Still, we feel that she is better off the drugs. The meds neither lessened nor stopped the seizures. It is good that she's not suffering through their horrid side-effects, especially the stress of administration in which she would vomit & seize every time they hit her stomach. Better than that, however, is that Addie is no longer sedated. She is very present with us--looking around and learning about her world, even if in a very limited way. She is not drugged and it shows in her eyes! This may, in part, be why we are seeing so many seizures. The input into her brain may be overloading her now that she's alert and attentive.
We had one more drug interaction in December: HIVES! Addie broke out in a horrible case of red splotchy rashy bumpy welts for three days. I totally panicked and reviewed everything she'd touched or that had been pushed through her g-tube. I assessed what I ate just in case an allergen had transferred through the breastmilk. Mostly I prayed. The answer came in a medical book by my bedside. I thumbed through it and read a blip on hives in relation to steroid cream given for eczema. I'd been dabbing a dot of a prescribed cream on her g-tube site since March. I quickly pulled out the cream and looked it up on drugs.com. It described, nearly to a T, what I observed in Addie--a rash around the g-tube site for a few days followed by systemic hives. Long-term use of the cream, especially when bandaged, had a way of building up toxicity in her bloodstream. Needless to say, Addie is no longer on that drug cream either. We haven't had any more issues since stopping the cream.
So--Woo Hoo--Celebrate!!! Addie is drug-free!!!
We love having her here with us mentally. We love looking into her dark brown eyes and finding the sweetness of her soul staring back at us. She's as congenial as she ever was--just a soul of peace and delight in that tiny, crippled body. It is an honor to have her in our home and in our arms daily. I feel that for everything she requires in her care, she restores back to us ten-fold in love and joy. Such a heavenly gift!
