Wednesday, November 13, 2013

Put it on our tab

      On the last day of Disneyland, Evey had her first grand mal seizure.  In the neurology world they are now called tonic clonic seizures, but I'll call it grand mal in this post and kick it old school.   There are many different types of seizures and Nate and I have been pretty sure she's been having other types of seizures, but this was the first grand mal we've seen.  Epilepsy is super common with her syndrome and since she manages to have everything that comes with the syndrome, we figured epilepsy was inevitable.  Because Nate and I have already seen some pretty scary things with Evey, we weren't too phased by it.  She vomited and turned blue right after, but we had her suction machine and steroids and it helped pull her out of it pretty quick.  It's amazing how nothing really shocks us anymore with Evey.  We've become pretty desensitized to all things medical and as crazy as it sounds, it was nice to finally witness an undeniable seizure, because now we are 100% she does have epilepsy and we can treat her accordingly with our neurologist.  Knowledge is power for us.
     Yesterday we had a few procedures done and a sedated hearing test called an ABR.  We knew she had some hearing loss, but we haven't been too worried about it because we assumed it was conductive, meaning it was caused by recurrent ear infections or malfunctioning tubes and that she'd eventually grow out of it.  Ends up, we were wrong.  She has moderate hearing loss in both ears and it's not conductive.  Our poor girl has been deaf for 18 months and we had no idea.  Although, in this house, maybe being deaf isn't such a bad thing.  So, pink, sparkly hearing aids are coming our way.  Add that to the pink wheelchair I ordered, and the pink glasses she'll be getting next month...I've probably gone too far.  After we die and Evey talks to me for the first time, I'm sure she's going to have some words with me about the pink.  I apologize Evey, but I just cannot resist.
    In all seriousness, this girl has a fighter spirit.  All of our therapists say all the time that they've never seen a child with so many physical issues that is so determined to progress.  She continues to melts hearts, ours included.
    A while back I wrote about Evey's boyfriend, Paxton passing away.  Our dear friends gave us Paxton's stander to use with Evey so she can learn to bear weight.  It's been surreal to see her in it, she loves it, which is incredibly unusual, because most kids have to build up a tolerance to being in it.  Evey must know it's her boyfriend's and that's why she wants to hang out in it all day. I always think of Pax when I see her in it.
     I know without a doubt, that families are forever.  Paxton's family will be reunited with him one day and I know when it's Evey's turn to go, we will be with her again too.  That's the peace that carries us through every new diagnosis, every new twist and turn in our mortal lives.  We are blessed.

  Mosiah 2:41 And moreover, I would desire that ye should consider on the blessed and ahappy state of those that keep the commandments of God. For behold, they are bblessed in all things, both temporal and spiritual; and if they hold out cfaithful to the end they are received into dheaven, that thereby they may dwell with God in a state of never-ending happiness. O remember, remember that these things are true; for the Lord God hath spoken it.

1 comment:

  1. Mark has epilepsy too. No fun. He also has a standing frame, but his is much bigger.