Tuesday, May 31, 2011

Living with Lennox-Gastaut Syndrome

As the title suggest I figured it would be good to talk about some of the things in our life that are bringing us to a "new normal."  I by no means am an expert nor have I lived through this long enough to know much at all.  All I know is what I see, do, and learn each day. 

Six weeks ago when we left the house for any amount of time the call would be for sippy cups, diaper bag, and on the very rare occasion Gracie's seizure bag.  Now, it is still sippy cups and a diaper bag, but also Gracie's helmet, Emergency Meds, and the Seizure bag.  Not a huge increase in stuff, but still more things to remember.

Before we even left the hospital in April we had to have a new car seat for Avagrace.  Prior to starting the ACTH injections she was 52 lbs.  When we left the hospital (and two weeks after the first weigh in) she was 65 lbs and some odd ounces.  The car seat had to have a five point harness to keep fer from "folding in on herself" in the booster seat with over the shoulder seat belt that we used with it.  The seat we chose is awesome because it keeps her in a five point harness until 85 lbs.  It was a pretty pink which appealed to her despite the fact that she was going back into a "baby seat."  We just told her she was in a race car drivers seat.  :)  Here is a picture and a link to the seat...

Britax 85  Ok I cannot get a picture to load so I will try later. 

Her seizure bag is this:  A book bag with a warm, soft, and large blanket.  She has two blankets that we rotate.  One is a queen size flamingo pink thin minky fleece material that we got from Target.  The second is a twin size, thick minky fleece in pale pink and it is so thick it is quilted.  We have these because she has a hard time regulating temperatures especially when Post Ictal.  We also have her favorite snacks including easy to chew ones like pudding.  If we have to go to the hospital for her seizures she is always starving when she comes around and there is never enough of what she wants or can eat.  We have water bottles, a few small art activities in case we are in hospital for a long time, 2 Goodnights and two changes of clothes for the vomit and voiding problems that come from seizures.  We also have a two day supply of her medicines in case there is none wherever we are.  

So, I hope this helps.  I am going to end here and will write some more another day!  Blessings to all!

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