"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Wednesday, July 31, 2013

All About July

I guess monthly Luella updates have been my thing lately. Summer is keeping me too busy to sit down and write! Luella only had three seizures in July! She had her longest stretch of seizure-free days since May of 2012! She went 17 days!! YAY! And a HUGE YAY for all the fun things she was able to do this month! Look for pictures below.

The seizure she had on July 10th was not a normal seizure and had us wondering if the seizure was done. It was a non-convulsive seizure which makes it difficult to tell when the seizure is done. This seizure was even more strange because her O2 and heart rate were completely normal. We rely on Luella's pulse ox monitor to tell us if she is having a seizure when she is sleeping. Her O2 usually drops and heart rate increases. Not the case this time. It kind of looked like the seizure was done but her eyes were still open - like she was sleeping with her eyes open. I did give her two doses of midazolam and we didn't see any noticeable change. We were torn about taking her to ER; they wouldn't know any better if the seizure was done and may end up giving her more meds unnecessarily. Jim laid his hands on Luella and I put my hands on his and he prayed that God would help us to know if her seizure had stopped or let us know if she was still seizing so we could get her the help she needed. Immediately Luella's pulse ox monitor starting alarming and her oxygen was dropping into the 60s! We knew she was still seizing, so Jim scooped her up and ran to the van to head to the ER. As he was backing out of the garage Luella lifted her head up and turned it from side to side - the seizure had stopped!! We were so glad to avoid a trip to the hospital! This seizure fit the description of non-convulsive status epilepticus (NCSE). These are scary and dangerous seizures since it is so hard to tell if the seizure is done and sometimes they can be very difficult to stop. We pray that we don't see another one of these!!

Luella's latest seizure was on July 27 (ending her 17 day run). We were at our local county fair. The kids were having so much fun on all the rides. I was just getting Luella buckled in on a ride and she started seizing. I was SO thankful the ride hadn't started!! I'm always nervous about letting her do a ride without me but I also don't want to deprive her. Thankfully it was a short seizure and no meds were needed. Luella bounced back so quickly. We spent some time looking at some booths and exhibits and then she was ready to eat supper. After supper she was ready to go and asking for more rides. She already had her balance back and was able to have some more fun!! Another answer to prayers.

Luella has been able to enjoy swimming this summer!!! Last summer almost every attempt at swimming was foiled by a seizure. This year she has been swimming a lot without one seizure! She mostly just swims in a little pool in our backyard and one time a big outdoor pool, but I think she logged over 12 hours of swimming in just a 2 week period! We found that sprinklers aren't good for her - maybe a combination of cold water and all the running around, but she doesn't seem to be able to do a sprinkler without a seizure. We have our pool water ready in advance so the water is warmed up slightly and it works out great! It has really cooled down a lot here. We are hoping to get a few more days of swimming in before the end of the summer.

Luella also had appointments with her neurologist and the neuropsychologist we saw back in April. The neuropscych did some shortened versions of the testing she did last time. She found that Luella is doing about the same. Cognitively she tests at the equivalent of about a 4 1/2 year old (at 3 years 9 months old). Behaviorally, Luella acts more like a 2 year old. Testing her is VERY difficult. Jim didn't stay in for the testing last time but he did this time and he was surprised just how difficult it is to get Luella to answer many of the questions. We see the difficult behavior at home too but when you are trying to get through an hour of testing it is much more visible. ADHD is something we will continue thinking about. Luella's neurologist was very pleased with how Luella was doing - she was 2 weeks seizure-free at the appointment time and finally sleeping better too.  As always we have a list of things we want to try but we take things slow to be sure of the affect on Luella.  Thanks for all your continued prayers.

I'll leave you with a video slideshow of Luella and her siblings enjoying their summer!

1 comment:

  1. So glad to hear that July was such a good month for Luella! The slideshow is adorable :)