Just wanted to give a quick update on what has been happening over the past month. Mira has had a quiet couple of weeks and some great stretches of quality sleep. She hasn't been getting up much in the middle of the night and when she does, she usually goes back down without an additional dose of melatonin. The past week hasn't been so great, but no complaints after a few solid weeks of scream-free evenings.
I wish I could say the same for Jonah, who is still getting up every two hours throughout the night. He also caught another cold virus last week, with another round of gagging/vomiting, fever, and nebulizer treatments. He has been feeling better and vomiting less over the past few days, so he is on the mend, we think. I must admit that it all feels exactly like Groundhog Day (the movie - one of my all time favorites) as if the beginning of February is exactly like the beginning of January. Where have the last 4 weeks gone?!
We finally ordered Mira's bed today. Thanks so much to the IDC, the Love Fund, and Dad and Dottie for helping us out - we appreciate the support tremendously! It should arrive in a few weeks and frankly, it couldn't be soon enough. Mira continues to get her legs and feet caught between the rails of the crib.
I thought I would post of few pics of all the kids - they are growing so fast. Mira got a desperately needed haircut late last week, which is always an adventure. Mira HATES to have her hair brushed and screams bloody murder whenever Sarah tries to comb the tangles out, so hopefully snipping a few inches off will lessen her daily hair-brushing tantrums. We have noticed that she gets ten times more upset having her hair brushed as she does when she gets a blood draw.
We haven't heard back on the CDKL5 deletions testing as of yet, but we will check in with genetics in a few weeks to make sure things are moving along. Mira's seizures have been pretty steady and consistent over the past month. Although some seizures seem to be more intense than others, that has never really meant anything. She still is having several dozen small seizures a day, which hasn't changed since last summer. She is holding steady on 75mg of Lyrica still and we don't plan on changing her meds anytime soon.