"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, April 24, 2013

Seizure Free Run Ended Tonight

Unfortunately Luella didn't make it past the 9 day mark. She had a seizure tonight as we left Grandpa and Grandma Johnson's church supper. I had just buckled her in her car seat and Jim turned out of the parking lot. I heard Luella make a gasping sound and turned around to see her having a seizure. :( I believe this was the first time she's ever had a seizure while in her car seat. Thankfully it stopped quickly with one dose of midazolam and I held the oxygen on her while Jim drove home. She slept for quite awhile then woke up, got ready for bed, read two books and back to sleep! She is such a little trooper through all of this!

Tuesday, April 23, 2013

More Rescheduling

Thanks to all the snow we've been getting we had to reschedule Luella's neuropsych evaluation for the second time! Who would have thought we'd have issues with snow and ice in April!? As it began to sleet and snow Monday morning I got a hold of Jim who was still in New Jersey for work and we decided not to risk it and reschedule. We weren't even sure if and when he would make it home Monday night and then we would have had to leave at 5am on Tuesday for the appointment! Jim's plane was delayed by a couple hours so it was later when he got home. We were glad we didn't have to get up at 4:00! It did turn out to be quite slippery here this morning and school was two hours late again. I was worried that we'd have to wait a whole month to get Luella in but Dr. Bishop herself called me and worked us in for next week!! Hopefully we are DONE with winter by then! Bless my dear neighbor for clearing my driveway / sidewalk three times while Jim was gone!! I'm really tired of the snow and cold!

Luella is currently 8 days seizure free! She did have a seizure April 15th but remained seizure free the entire time Jim was gone! We pray that we can just keep adding days! About the last seizure... I had just told Ashlyn I needed to run upstairs and that she should keep an eye on Luella. They were already playing catch with a balloon and Luella was having fun. I didn't even get to the top of the stairs and Ashlyn yelled that Luella was having a seizure. Ashlyn recognized the seizure immediately and lowered Luella to the floor before she fell! She did exactly what she was supposed to do! It was another more violent seizure and she bit her tongue again but she was feeling almost back to normal within a few hours. I'm so thankful for Burke, Ashlyn and Ryker and the help they are with Luella!!

I've made it through Jim being gone many days! He does have one more trip coming up and then hopefully he can be home for awhile. I've gotten a pretty good routine down though! :-) Now we pray that we can actually get Luella to her appointment next week and that she will handle the long day of testing okay! Thank you all for your prayers and continued encouragement!

Thursday, April 11, 2013

Catching up....

Lots of things to report! I haven't taken the time to write since Jim was gone for work and we just had a big ice storm with snow AND kids home from school! :-)

Luella has had a couple of seizures in the last week. One on Saturday morning - Jim was gone then but the other kids were great helpers and Luella came through it pretty well. She also had a seizure last night (Wed) after supper. Jim was home but wasn't nearby and once again the kids were great helpers. While two seizures in a week's time is more than we'd like for Luella, we also want to remember that so many little ones are dealing with SO much more. When you keep Luella in your prayers, please pray for little Regan (she has Dravet also). She's had over 300 tonic clonic (grand mal) seizures in the last week! It's just heartbreaking!

On a positive note, Luella has really accomplished some "big girl" things this past week! When Jim left for work last week I decided it was time to get busy potty training Luella. She will be 3 1/2 this month and Ashlyn was potty trained closer to 2 1/2. I felt that I didn't want to put too much pressure/stress on her before now and was just going to let her tell us when she was ready. I decided I was ready! I thought she could do it too so on Thursday we went to school in the morning then after her nap I put her in panties and showed her the "Potty Train" chart I made for her. She was very excited! She's been in panties since (except nap and bedtime) and only had 4 accidents - one was during her seizure on Saturday... another thing we'll deal with now. But she has done GREAT!! She is SO proud of herself! She couldn't wait to tell daddy when he got home and show him her sticker chart. (I kept our endeavor a secret from him while he was gone.) Jim says there is no problem I can't solve with crafting! :-) It feels weird to not be changing diapers during the day!! This is the first time in 9+ years we haven't had someone in diapers in this house!! I guess technically Luella is still wearing diapers when she sleeps, but not having to change diapers all day is awesome!! There was a time when we had THREE in diapers here!!

Another "big girl" thing is being able to swallow a pill! We wanted to try time-released melatonin for Luella to see if it would help her sleep better through the night. We've been dealing with some rough nights lately... well, mostly daddy has been dealing with them. Jim is great and lets me sleep! Mostly because I'm a softy and can't let her fuss or cry! Last night she was up for five hours straight!! Anyway, the melatonin is little tablet and she is able to swallow it just fine! We had a couple nights that it was pulverized, but now she does great! Sadly, it isn't helping her sleep. :-( But since she took that just fine we tried giving her one of her other meds as a whole capsule tonight and she got it right down!! This will make giving her meds SO much faster/easier!!

Luella was scheduled for her neuropsych evaluation today but since we got so much ice and then snow we had to reschedule it for a couple weeks from now. While it's been sad so see so many trees going down in our town, the snow was perfect for making a snowman and the kids had fun collecting icicles today! Luella was able to be out for about an hour and a half and had so much fun playing in the snow!! And NO seizure!

Please continue to pray for Luella  - pray for better sleep, for a successful neuropsych eval in a couple weeks and  for things to go smoothly while Jim travels again later this month. Please remember to say an extra prayer for little Regan too! Thanks everyone!!

Thursday, April 4, 2013

Purple Power

Let me start out by saying this post is past due! I should have posted this last week. Tuesday, March 26th was Purple Day for epilepsy awareness. We all wore purple in our house and I thought I'd probably see a few friends and family wearing purple too. I was overwhelmed by all the support! I was at Bible study that morning and several friends there had their purple on! Had I given them more notice, I know more would have! Back in November for Epilepsy Awareness Month they all surprised me by wearing purple!! They are a GREAT group of ladies who always do more than they should! :-) I had quite a few messages throughout the day from people telling me they had their purple on and a few pictures shared with me as well. A high school friend who runs a daycare did a MAJOR purple day! All the little kiddos wore purple and also had sweet little purple ribbons painted on their cheeks! They each decorated a purple flower for Luella and mailed them along with several other purple goodies for her. We found a very special place for Luella's "purple garden"! It's the kindness and encouragement and most importantly the prayers we get from all you special people that give us hope for Luella. Epilepsy does not get the attention and funding it deserves. We pray that through these Purple Days and Purple Months we can build awareness and change that for Luella and so many more.

Some pictures from Purple Day 2013
With Mommy and Daddy

Luella and her siblings.

Purple Accessories!

Purple Friends

Shana's Daycare Kids

Of course Luella wanted her own purple ribbon once she saw all the other kids with theirs!

Luella's Purple Garden

Wednesday, April 3, 2013

Seizure #112

Luella had a seizure tonight as I was getting supper ready. It had been 9 days so I was kind of expecting it at some point. Jim wasn't home from work yet so the older kids were helpful in running after things for me and calling out the time when I asked for it. This seizure took TWO doses of midazolam - which we haven't needed for awhile. After sleeping for awhile she just cried and cried. We tried Elmo and that helped a little. I just hate to see her going through this. She finally did eat a little supper, had a bath and was ready for bed. Hoping for a better day tomorrow!

April will be a crazy month! Jim travels quite a bit for work. I'd appreciate prayers for things to go smoothly while he is gone. I don't like having my main supporter a thousand miles away!!

Despite all we go through, I do truly feel blessed! We have so much to be thankful for! Easter was a blessing for us. We were able to spend the day with family and it was great to see Luella just being happy and carefree! A wonderful way to celebrate our risen Lord!

Our Family on Easter 2013

Sisters! Luella and Ashlyn