Mira..........Volume Control Please!

Mira was in an exceptionally good mood all day today. Perhaps it was the riveting trip we took to Home Depot this morning that inspired her. She actually slept through the night last night and didn't get up until after 7:00am. Since Eli has had the flu all week (missing 4 days of school) and now Jonah coming down with a high fever (and Sarah too) Mira and I are turning out to be the only ones avoiding the sickness that has perpetrated our house this past week. Knock on wood, Mira hasn't had so much as a sniffle and has been in a fantastic mood. Go figure?!

One of things Sarah and I noticed today in particular was her vocal talent. She either needs to stop watching American Idol or she is trying to tell us she wants to go out for karaoke night. She has some serious lung capacity these days. The combination of vocals, tray kicking and her globe toy is enough for us to consider ear plugs. All joking aside, it is great to hear her making new sounds and having fun!

Mira tends to do a lot of hand-mouthing throughout the day, but today she would stick her hand in her mouth and was purposely making noise (see video below) which was something new for her. She was consistently energetic today in her chair (much like in the video) and was doing a ton of vocalization, all day long. Enjoy!

Testing

Testing blog.

Video Test

So we bought another gadget - a 'Flip' video camera that holds up to 30 minutes of video and is no bigger than a cell phone. It was marked down from $150 to $60 on Amazon, so I'm not sure how great it works. I just created a little Mira video of her to see how it does. The resolution looks great on our laptop(s), but comes out pretty poor here and it's jumpy - not sure what the deal is.

Real Life Groundhog Day

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.