Well, we (including Jack too) have been home from the hospital for a week now.  No real changes have been made as of yet other than a sleep aid & weaning off a muscle relaxer.  With Dravet Syndrome, the processing of medications is not the same as it is in most people.  DS patients are highly sensitive to medications or resistant-it is extremely hard to find a good balance with medications.  Mental health care is certainly lacking in this country.  I have heard reports on this for years without ever really giving it much thought until it happened to us.  We learned that placing Jack in a facility is not as easy as saying he needs to go.  Placing Jack would be heartbreaking but may eventually have to be a possibility.  During our hospital stay, we learned that such facilities have a waitlist. When you factor in a severe disease like Dravet Syndrome, the list of placement opportunities lessens dramatically because you have two disorders to contend with, behavior & health issues.

Things are the same, Jack is not raging which is wonderful & he is getting back to his regular sleep routine.  We are going to begin Jack on a new medication today Wednesday, December 20 that may help his behavior, seizures, & weight gain.  Of course behavior control is what we desire first & foremost.  I ask that each of you reading this blog to pray that the new medication (Depakote) will be the miracle we have been praying for.  Jack’s appetite is severely lacking too, he lost interest in eating nearly totally this spring, having lost 25-30 pounds since.  He was skin & bones then, now he is worse.  This medication can help to stimulate the appetite too.

I often wonder if I should have ever started this blog.  Worried that Lee, Coleman, and/or Ava would be embarrassed about me writing of things that have gone on or me telling too many details about our family situation or worried that people in the community would look at us differently-which I have definitely been on the receiving end of that.  We don’t want sympathetic glances, only your prayers.  I feel it’s important that others know the hardships we are facing.  Only good can come from writing this blog which is prayers.  We have fought this battle for 16 years every.single.day.  Someone once said to me, I don’t know what you did to deserve this but it must of been bad!  I wish I knew!

The challenges we have faced seem to be cruel & unusual circumstances (hence the name of my blog & maybe my one day bestseller)!  I would love to be somewhere on the beach, toes in the sand, not a care in the world.  My fantasies take me there periodically.  Vacations are out of the question for Lee & myself.  We have to depend on my parents & my sister to take the kids to the beach for their summer vacations.  Taking Jack out of his element only elevates his situation.  This spring Coleman went on a cruise with my Mama, my sister, & a family friend.  I am eternally grateful that they could give him that experience but I was heartbroken as well.  If there is anything exciting going on within a two hour drive, I take Coleman & Ava as long as I can be home that night.  Other vices that get me by this cruelty are Young & the Restless, QVC (love to home shop), playing softball with a great group of ladies, my Bob & Sheri podcasts, & listening to my favorite radio station WLWL 770am their speciality is beach music.

This Christmas, we are going to try to provide a happy season even though we are struggling with sadness at each breath.  As we edge closer to Christmas, please join us in prayer that this medication will be our Christmas miracle.

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

10 thoughts on “Home”

  1. Amy,
    You have no idea how much that y’all are on my heart and mind. I’ve seen something very sismilar living next to my cousin, Mike Lovin. He was not violent but he had terrible seizures. My heart goes out to you and your family! I love you❤️

    Liked by 1 person

  2. Carlene and I think about Jack and Your Family so often.We prayerfully hope You and the medical staff have found some lasting relief for Jack’s problem which of course becomes a Family problem . One thing You can always remember ,You have done Your best We marvel at the way You handle the problems and still stay so active in so many meaningful ways.

    Liked by 1 person

  3. Praying daily for all of you. You and Lee are great parents and God makes no mistakes when it comes to Jack. We must have faith and trust in every thing for He knows what’s best for all even though we don’t know. Praying, peace and rest and a merry christmas.

    Liked by 1 person

  4. I am continuously amazed at your strength with each reading of your blog. And then to think that right in the middle of all this you are thinking of others bringing ice cream and milkshakes all the way into Rockingham to the guys and myself at the tree lot! You are truly a thoughtful and selfless person. Continued prayers for all of
    you and I surely hope this medicine will be your Christmas miracle.

    Liked by 1 person

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