Wake Up Seizure, Purple Tomorrow

Luella's morning started with a seizure. I'm battling some bug and was still in bed. Jim was up getting the older three ready for school when Luella's monitor started going off. He ran up, saw her seizing, then back downstairs to get her meds. When he returned the seizure was just stopping without any meds! She slept for awhile then Grandma J arrived to snuggle so Jim could work from home and I was still sleeping. I got up later and found out about the seizure. By then Luella was pretty much back to normal. She has been busy coloring and playing this morning. I was feeling better when I first got up but now my stomach is back to doing flip flops. I'm hoping this bug isn't passed on to anyone else. I suspect that maybe Luella is coming down with something since that is what usually triggers those early morning seizures. I was hoping we were on to something since her last seizure-free stretch was 12 days, this time only 6... We appreciate your continued prayers for Luella and all the precious little ones who deal with seizures!!

Tomorrow, March 26th, is Purple Day for Epilepsy!! Wear purple and show support for all those affected by epilepsy! I'm hoping I feel well enough to be out and about showing off my purple tomorrow!!

Seizure Tonight

I was hoping it would be much longer before I had to write another seizure post. Luella had a seizure tonight after 12 days seizure free!! Yay for 12 days, boo for tonight's seizure. It happened right in the middle of Ryker's birthday party with his friends from school. Thankfully Grandma J was here and could get the boys out of the room and back to coloring. We did hear a few questions from them but when all was done we reassured them that Luella was okay. Grandma held Luella while the party went on and Luella woke up enough at the end to enjoy the rest of the party.

I was really hoping that a med change we made was helping.. and maybe it is... we did go 12 days! We do have one other new med (diamox) that we can start anytime too. We are just waiting to see where things stand before making too many changes. The GAPS diet hasn't done much for Luella. We've made the decision to leave the diet. While we will be adding things back to Luella's diet we are much more educated now and plan to eat healthier in general.

Thanks for all your support and prayers!

Holding my sleeping princess this morning...

I'm sitting here holding my little princess after an unusual morning seizure. Usually a morning seizure happens first thing (before even getting out of bed) and then only when she's sick. This morning she got up like usual. She did have a quick bath since she was a little wet. She played with her turtles for a few minutes then she got out of the tub and I helped her get dressed. As I carried her downstairs she was being goofy, kissing the top of my head. I sat her in her highchair and it was like her eyes fixated on something and I could just see the seizure taking hold. Thankfully it only took one dose of midazolam to stop but it was scary seeing her oxygen drop to the lowest level I've ever seen - all the way down to 22%! SO thankful for our oxygen tank!!
I never had a chance to post after her last seizure a week ago Thursday (on Ashlyn's 8th birthday). :(  She's maintaining her seizure a week average... We'll be making some changes soon. Please pray for good results.

Luella's Appointment

Wow! We had a LONG day on Monday. I got up at 5:30 - after a short night of sleep - for some reason Luella's pulse-ox decide to be picky and go off several times during the night. Thankfully all the alarms were false alarms. We got Luella up at 6:30 and got her dressed and headed out. Grandpa and Grandma Johnson were here to help the other kids get off to school. We were thankful for good roads, although it was a little foggy in places, we had pretty good driving conditions. Luella enjoyed having her breakfast in the van and then decided to stay awake the ENTIRE drive. We were literally 5 minutes from Gillette Children's when she started to close her eyes. She was re-energized when we got out and she could stretch her legs!

We checked in and Luella was weighed and measured. This girl is growing!! If you've seen her lately you know! She is already almost as tall as Ashlyn was at 4 1/2 yrs old and she is not even 3 1/2 yet! Dr. Wical was pleased that her height percentage has surpassed her weight percentage on the growth chart now. We talked with Dr. Wical for a LONG time. Luella's appointment was at 11:00 and 2 hours later we finally finished up! She is such a great doctor - always willing to take the extra time if needed. At 1:15 we headed down to the hospital cafeteria for lunch. Dr. Wical needed some time to write up all the check out papers / instructions and get some lab orders in place. After lunch we checked back with Dr. Wical, got the necessary paperwork and headed to lab. I warned the lab tech that Luella had poor veins and was a hard poke. He was very sure of himself and got the vein on the first attempt!!! Yay! Luella shed two little tears then watched as 6 tubes of blood were filled! She was so proud of the TWO princess stickers she got!

Luella with a "real princess"!

During the times we waited at Gillette for papers and lab orders Luella spotted a "real princess" visiting kids in the waiting room. She told me "just a minute" and ran as fast as she could to 2012 Miss South Central Minnesota, Tiffany Buszta! Tiffany even brought a special crown for Luella to put on and take a picture! Luella also got to meet the cutest, fluffiest white dog named Sasha (see pic below)! She looked like a little bear! Sasha is a samoyed and so cute!! Luella even got to give her a treat. Sasha's owner gave Luella a treat broken in two and told her to place a piece on each of Sasha's front paws. Sasha didn't touch the treats until Luella said "okay"! Sasha is an amazing dog. You can watch more about her here - http://www.youtube.com/watch?v=hvdfhakoUTQ.

As we were driving out of the Gillette parking ramp a little after 3:00, Luella finally took her nap! :-)

It was a good visit. We have a couple new things we are going to try with Luella if the GAPS diet doesn't give us better seizure control soon.

Luella will be having a neuropsychology evaluation done. Hopefully we can do this in Sioux Falls otherwise we'll be driving up to Gillette again for that. She'll be getting repeat evals done every 3-4 months also until we can tell better where her development is headed. We believe Luella is showing some signs now of something being not quite right developmentally. Dr. Wical could definitely see her lack of inhibition. Luella is VERY outgoing and will often hug (almost attack) total strangers. It's cute now to have a little 3 year old hug you but it may start to be uncomfortable to some as she gets older! Luella is definitely a smart little girl and knows many age-appropriate things, however she is having some problems in some areas. One thing is we find her to be very inattentive at times. It can be difficult to engage Luella in a back and forth conversation. I usually have to ask her things many times. One thing we hope to sort out with the neuro-psych eval is if she is having trouble processing the information. Luella has many other interesting characteristics - she always gallops or skips and loves to spin and make herself dizzy - which is even more dangerous when your balance is already a bit off! We don't know what these things mean, if anything. Dravet kids often show some characteristics of autism so we might be seeing that. We hope to figure out more as we get the eval done.

Oh, and the eating out went great! I packed all of Luella's own food and she was fine eating that while Jim and I ate something else. A couple of times she asked for something we had but when we said no she was right back to eating her food!

Thank you all for the prayers!

Luella with Sasha!