"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

Saturday, August 31, 2013

6 Seizures in August

I've had a few people ask - hoping - that Luella had a good month without many seizures. We have had a TON of fun this month but unfortunately Luella ended up having 6 seizures this month. The last one, yesterday, landed her in the ER. She had gone down for a nap and within about 20 minutes her pulse-ox started alarming. I quickly ran in and found her unresponsive, staring off, drooling and her O2 down to 70%. I'm sure she had been seizing for awhile already before her O2 dropped and the alarm sounded - she had quite a pool of drool already. I had been listening to her baby monitor since she laid down and didn't hear a thing! I'm so thankful that her O2 did drop so I knew she needed help! Two doses of midazolam didn't do anything. I was on the phone with Jim and Luella almost stopped breathing. She was breathing very little and her O2 dropped again. I gave her one more dose and put the oxygen mask on. Jim came home immediately and we rushed her to the ER. After that third dose she did cough and closed her eyes so we were pretty sure the seizure was done but she needed to be in the hospital after that much midazolam. We wanted to be there if anything else happened too. She slept peacefully there for a couple hours and woke up in a much better mood then I anticipated. We were able to come  home and she just wanted to be held and kept complaining of a headache. By supper time she was doing better and the headache was gone. This seizure was probably 20 or more minutes long. I can't help but think about all the recent Dravet kiddos that have had that "one big seizure" that changes everything. I'm so thankful that God allowed Luella to come out of this one without any problems!

Despite having the 6 seizures this month Luella has had so much fun! We took a family vacation to a Christian Family Camp only about 2 hours from where we live. We were there four days and had the best time! Luella did have one seizure there right when we got there but the rest of the time was seizure-free! Luella got to ride a horse, go swimming, ride a pontoon boat and had a BLAST spending time with the camp counselors so Jim and I could have some time too! That's right we actually got to have a "date" at the camp!! Such a fun and special time for our family. The staff there were always willing to help out with Luella so we could enjoy time playing with the other kids too without one of us always on Luella duty! Luella got to paint and do so many fun things, she LOVED it!


Burke, Ryker, Luella and Ashlyn
Date time!


After a quick pit-stop at home after Family Camp we headed down to southern Nebraska to where Jim's grandma lived (she passed away last November). We helped with loading some things at the house. On the way we stopped in Hastings for Kool-Aid Days! Kool-Aid was invented there! It was a lot of fun and maybe too much for Luella since she ended up having another seizure there as well. We were glad she had some fun before that!

Luella got to enjoy some fun in our backyard sharing her little pool with our little neighbor girl! Yes, it has gotten H-O-T here! They had so much fun baking their mommies "cakes" and lots of other yummy things! Later when the older siblings came home the water guns came out and it was a war zone! All that running and excitement along with the cooler water in the guns resulted in another seizure. Once again, thankful for the fun she had earlier!! She even got ice cream from the ice cream truck right in front of our house!

Luella is excited to be back at school - going to speech so far, others things will be added in eventually as well. She just loves to be at school! When I told her the first day of speech was coming she told me I could help her put her backpack on and she would go to school and I would stay home! Little stinker! I don't sense any fear of being away from mommy!! I actually go with her to speech and stay there, leaving her at school will come much too soon for me! I can't even think about that right now! Oh boy..... <sniff>

So along with a few other seizures here and there, we had a very busy month! We are SO THANKFUL that even though Luella has these awful seizures, she continues to do so well! She bounces back and we once again have our Luella again. My heart breaks for those families whose children don't come back from "that one" seizure. Our Dravet community is currently grieving for another little angel. We pray for that family and several others that are dealing with some devastating circumstances right now. I just hold Luella tighter and pray more fervently that God will protect her... but HIS will be done! Thank you for your prayers and support!


Wednesday, August 7, 2013

CNN Marijuana Special

CNN will be airing a special on marijuana on Sunday at 7pm (central). The story features a Dravet family from Colorado.

http://cnnpressroom.blogs.cnn.com/2013/08/05/weed-drsanjaygupta-reports-premieres-on-cnn-sunday-august-11-at-8-pm-et/

If you'd like to read more about the Figi family, they have a story here as well - http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/index.html?sr=sharebar_facebook