I’ve come to dislike April. In 2013, on April 25th, Kelsey was first suspected to have hydrocephalus. We had a routine sonogram and the dilated ventricles were detected at 33 weeks gestation after an otherwise healthy and normal pregnancy. A day later it was confirmed. Two weeks later it was obvious she had had a stroke in utero, which likely caused the hydrocephalus. And days after that she was delivered, via c-section.
Last year, on 4/4/14, Kelsey had strabismus surgery to correct her eyes turning inward. The surgery went ok, but the days, weeks, and months (year!) that followed proved to be very difficult. We attribute Kelsey’s poor mood to the surgery and altered vision, but after this April, maybe it was something else causing her unhappiness and lack of development?
And, here we are in April of 2015, and we are going through more challenges with Kelsey Ann. If you’re behind, Kelsey was diagnosed with Infantile Spasms aka seizures on 4/7/15. And this April has been another one for the record books.
We were hoping that a heavy dose of prednisolone (a liquid steroid) would knock the seizures out completely and that Kelsey would be seizure free. That didn’t happen. She’s been on the meds since early this month and while the spasms decreased dramatically…at least the ones we can see…they aren’t gone completely.
We took Kelsey to have another EEG this past Friday and even though we only saw 1-2 spasms per day, more were seen through the test. And any spasms are too many. So now we will wean off the prednisolone and start on a different seizure medication.
Right now, that means that she’s taking three liquid medications in the morning and the same three in the evening, plus an extra dose at lunch. That’s seven doses of meds for a 23 month old in 24 hours. Fun stuff. Actually she’s been great about taking the meds. Her saint of a father learned that calm voices and talking her through it works very well, compared to the head-lock, cool-loosing mother’s mode of giving the medication.
By this time Wednesday, we will lose the lunchtime dose and by May 4 we will almost have weaned off the steroids. That is good because Kelsey is definitely experiencing the “Roid Rage” I’ve heard about. She’s cranky, short-fused and not tolerating much. She’s eating like a horse and has gained weight quickly as well.
In the grand scheme, I’m glad there’s a “pill” to cure this disease. Hopefully, it is in fact, her cure. We’ve been warned that the search could continue for awhile for the right cure for her.
I’ve slowly wandered into the grieving wonderland of “acceptance,” but it’s still hard to accept. All we want is a happy, seizure-free, developing toddler. If that means she has to take some medicine to be there, that’s fine…I guess. And then I would like the rest of our Aprils, and every other month for that matter, to be healthy for my family. I know that’s all anyone wants…And life could be so much worse…We have so much to be thankful for…But we could really use a break. Thank you very much.