Sunday, January 31, 2016

Avery turns 8

We celebrated Avery's eighth birthday this weekend in beautiful 70 degree Houston-Texas-in-January weather! We had a rocky start Friday night/Saturday morning with some pretty intense, longish seizures, but lil'bub managed to bounce back and enjoy her birthday festivities.

We did a small family gathering for the second year in a row. I went back and forth about what to do and finally realized that I just honestly didn't have a big party in me right now. And lord knows I never know if Avery will be up for it. I think if you are long time reader of this blog, you probably know that typically my stress runs high, my brain is well scrambled, and I really have to take things one day at a time. Without getting into novel length explanation, I am just barely hanging on lately. THE THREADS ARE BARE. So I decided you know what? Lets keep this simple. Does that mean I didn't feel guilt about it? Hell no. But we did have a leisurely weekend where we just focused on making Avery as happy as we possibly could. As it should be.

Maddie helped me make her birthday banner

I invested an extraordinary amount of money into ingredients for 
a super low carb cupcake recipe.

Thankfully, they did bake up well and Avery seemed to really enjoy. Cupcake connoisseurs might have felt they were not quite up to par... but they got the job done!

We had a lot of swinging, laughing, Mickey Mouse Clubhouse, singing and music. And cuddles! Everything she loves most in the world. We even had a nice swim...

AVERY ELISE you are beautiful and strong and OH SO brave and I can't believe it was 8 years ago that you came into our lives. It feels like a lifetime ago and like yesterday at the same time. All mommy and daddy want is for you to be happy, and we work day and night for it to be so. We know there is so much going on in that special brain of yours and we will keep working to help you share it. Keep fighting, my love. We are so, so thankful that you are here with us. 


Monday, January 25, 2016

Up All Night

Twenty five days since my last post and still I don't have a lot of good news. The new year has not been as pleasant as I was hoping for. Avery continues to have nightly seizures that vary in severity, but sure do keep us all from getting good sleep. All except Maddie Brynn. Baby Bub is a great sleeper who luckily isn't affected by this craziness. She's still my bright and bouncy little lovebug that keeps all of our spirits up.

Avery had an especially long and terrible cluster of seizures this past Monday that lasted more than an hour. We ended up in the ER when it seemed like her emergency medicine was not going to stop them. They finally stopped as soon as the nurse took us back in to the ER, but it was too late to turn around and leave. They gave her an I.V. and watched her for about three hours until we were finally able to go home.

The following early morning she had another cluster lasting about 30 minutes, but somehow they stopped on their own. She was actually back to herself and fine to go to school. Thankfully, she had a great day at school and we didn't see any seizures for the rest of the day. She even got her Botox injections that same afternoon and recovered beautifully! She's such a fighter.

We've been in and out of doctor's appointments all month. But tonight takes the cake---for tomorrow, she is scheduled to have an MRI and a new test we've never done before. Earlier today I got a call from a nurse who informed me that Avery will need to be intensely sleep deprived in order for them to perform the test.  I had figured that we would just need to get her up a lot earlier than usual.... yea not even close. The lady tells me that I will need to keep her up from 7pm to midnight, let her sleep until 2am and then wake her up again until her test starts somewhere around 7:30-8am. So two hours total sleep tonight. My mouth was just gaping open when she told me this. I said no, no way in hell. This is not a typical child that might think staying up is fun. Or one that can run around and play and get hyper. This is my child that goes to sleep at 7pm on the dot because she is crazy tired. My child who still needs a nap every day to function!

The nurse told me this was the only way to get the test done. I told her it was totally insane and there was no way Avery would be able to do it. And yet, here I am at 10:30ish and miraculously, this little girl is sitting next to me, yawning like I've never seen before but somehow still awake. I mean, not somehow... awake with the help of a lot of bouncing, playing, clapping, singing and laughing at her very favorite episodes of Mickey Mouse Clubhouse. Her eyes want to close pretty badly but I am trying my darndest. 

Here she is at almost 9pm, watching Minnierella and taking selfies with mommy.

She was at the peak of her Mickey high then, but it's getting harder with every passing minute. I'm pretty shocked we've made it this far. Bub the hub has got the 2am-6am shift though, so that should be fun! 

Hopefully I'll have time to post a success story tomorrow while I chill in one of those super comfy hospital chairs during her tests. Don't be jealous!

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