"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

Monday, March 23, 2015

Always a seizure...

We pushed our luck on Saturday. It was Ryker's 8th birthday party and we took a group of kids to a fun arcade / play place for his party. Luella was SO excited to go there. She is always asking to go to the Brandon Pizza Ranch since the arcade is attached to the pizza place. She loves to play there but ALWAYS ends up having a seizure. She has not ONE TIME been able to play there without a seizure. We were hoping that she would do better this time.

We did some party games and had our pizza and cake first before we let Luella play. In the past we've let her play right away and then she has a seizure and is out the rest of the time making it difficult to eat, etc... This time we timed things differently. After eating and watching Ryker open his gifts we let Luella loose to play. Jim was on "Luella-time" as I packed up the party things to clear the room for the next party. He carefully monitored her playtime so she would play hard for 10 minutes then take a break and do something less intense. It appeared to be helping and she got in a good amount of play. Then literally just 2 minutes before we were going to leave - she had a seizure. She was in one of the inflatables - probably about the safest place to have a seizure. I was in the restroom at the time so Jim crawled in to grab her. The seizure was a tonic clonic (grand mal) and got the attention of several of the parents and kids playing there. We visited with a lady who had lost her daughter-in-law less than a year ago to a seizure. So heartbreaking! Thankfully Luella's seizure stopped on its own after just a couple minutes. Luella has not needed to use a rescue med to stop a seizure since her Make-A-Wish trip back in October!! That is just amazing!! We are SO thankful for that! Unfortunately thought it had only been 2 weeks since her last seizure. We are praying for another long seizure-free stretch!!

Here are a couple of pictures of Luella enjoying the party!

Ryker's party theme was mustaches!

Luella's first time running a bumper-car on her own!

Don't forget to wear purple on 
THURSDAY for 
Purple Day for Epilepsy Awareness!! 


Tuesday, March 17, 2015

When to Wear Purple?

So you all know that PURPLE is the color for epilepsy awareness, right? If you don't, now you do! Purple also happens to be our Little Luella's favorite color! Works out nicely. Do you ever wonder when you should wear purple to show support for epilepsy and Dravet syndrome? The easy answer is ANYTIME you want! :-) While you can wear purple anytime, there are a few special days devoted to epilepsy awareness and Dravet syndrome awareness. The first of these special days is coming up soon. March 26th is Purple Day for Epilepsy! Wear purple on Thursday, March 26th and read more about this special Purple Day initiative at http://www.purpleday.org/index.html.

The next special purple day is closer to our hearts as it is the Dravet Syndrome Awareness Day. This day is June 23rd. This year will mark the 2nd annual Dravet Syndrome Awareness Day!! We are excited that Dravet itself has a special day and we hope you will all mark it on your calendar and wear purple for Luella and those affected by Dravet syndrome! Read more about it at http://www.dravetfoundation.org/archives/events/dravet-syndrome-awareness-day.

Finally the ENTIRE month of NOVEMBER is Epilepsy Awareness Month!! So wear purple anytime in November and help spread awareness for epilepsy! More about it at http://www.epilepsy.com/make-difference/get-involved/national-epilepsy-awareness-month.

Thank you for your continued support!! I love seeing these Little Luella shirts worn randomly by so many of our friends and family!! If anyone is interested in ordering a shirt, please let me know. If I get enough interest to keep the cost down I will place another order before June.





Tuesday, March 10, 2015

Update: Great February but seizure at school on Friday.

It's been SO long since I've written a post! I guess that's mostly a good thing. Luella had a terrific February! Not one seizure the whole month! It's such a blessing to have a more "normal" life and not having to deal with weekly seizures like we were before starting Luella on Diamox. I say "normal" because life really isn't ever "normal" but we enjoy it as much as we can! :-)

Luella ended her seizure-free streak on Friday with a seizure at school. She went FIVE weeks! This was her second seizure at school. We are so blessed to have such caring and watchful people with Luella while she is at school. Luella's class was having some play time on the playground and Luella was having lots of fun. It's hard to know what the trigger was - too much excitement, over-heating, sun, cold air, etc....  Luella also woke up that morning with lots of sneezes and a runny nose so it could have been the fact that she was getting sick. The important thing is that everyone did exactly what they were supposed to do.

I was running a few errands downtown when I got the call. When I got to school they had cleared the playground and Luella was on the ground with many teachers and the school nurse around her. She was nice and cozy as a couple of teachers had given up their coats to keep her warm. At that time it was right at the three minute mark when her rescue med (midazolam) would have been given. Thankfully her seizure stopped on its own and no rescue meds were needed. Jim arrived shortly after and we got Luella loaded up and home again. Normally she doesn't sleep so much when she doesn't have midazolam, but the seizure - and I think the combination of her having a cold - really wiped her out. She slept about an hour and half then kind of woke up but then was really sleepy all afternoon. She really didn't perk up until about 5:00 that night.

Luella is still dealing with this cold but has enjoyed playing outside a few times over the past few days when the temperatures here have gotten so amazing! We are ready for summer!!

Thanks for following along and keeping up to date on all that is happening with Luella. We appreciate all the thoughts and prayers! God is good!


Sunday, February 1, 2015

Made it 25 days

Luella's latest seizure-free stretch ended on Friday evening at 25 days. (Luella had 2 seizures at the beginning of January with an illness.) We decided to take the kids swimming at our local indoor aquatics center. We haven't been swimming there for a LONG time. Luella tends to have seizures there but last summer was able to take in almost 2 weeks of swimming lessons after getting through a couple of seizures on the first days. We were hopeful that the new med we started in September (Diamox) would offer her some more protection when doing activities like this. Unfortunately that wasn't the case. We got in the pool and she was SO excited! She absolutely LOVES to swim and be in the water. She wanted to go down the little frog slide and after about 5 minutes in the water she went down the slide and came up seizing. :-( So scary to have a seizure in the water but that's why we never leave her side. Thankfully the seizure stopped after just a minute. Usually she sleeps but I think the excitement of being at the pool and just wanting to swim kept her awake but very sad. She cried for about a half an hour. I thought about taking her home but we decided to stay and see if she could get back in the water. I tried holding her in the baby pool but she still just cried and wanted the big pool. We went in the big pool and she was still very sad and wasn't able to do anything yet. It was so sweet the number of kids that came up to offer their pool toys to Luella to try and make her feel better! After a break was called we sat out for a few minutes and she started perking up more. By the time break was over she was happier and ready to get in again. Before long she was "swimming" again like nothing happened. It was so great to see her having fun again. I hate to see her fun interrupted but we are so fortunate that she can bounce back so quickly.

I'll leave you with a recent picture of our little Luella who is getting to be so grown up!


Tuesday, January 20, 2015

Thankful. At the end of a LONG day!

Well, we spent six hours at castle (Sanford Children's Hospital) today. Luella toughed it out through a bunch of not-fun stuff. We pretty much had tears from the get-go today. Starting with refusing to put the id bracelet on! :-( We picked our battles and I wore it instead!

Unfortunately even getting the medication to relax her wasn't enough to calm her for placing the catheter. Actually I doubt it helped at all. She screamed! Poor thing! Then even having to lie still for the radiology part of the test was difficult. I was able to distract her for awhile with some games on an iPad. At the end of the test they needed her to pee while lying on the bed so they could take x-ray pictures of her bladder emptying. What a battle that was!! She did NOT want to have anything to do with laying down while going potty! After a solid 10 minutes of crying she gave in and finally went. She looked pretty rough after all that crying. Once they got her cleaned up and a fresh gown on, we moved her to her bed and they covered her up with a nice warm blanket. She burrowed under that blanket and covered up her head like she was never coming out again!!

After all the testing she got to go back up to her outpatient room and chicken strips and RANCH arrived just as we got there! That was enough to perk a girl up!! She hadn't gotten to eat lunch before the testing so she was hungry!! It was about 3:00 by this point. After getting a full tummy we checked in with Dr. Eeg's office and got the results from everything.

Basically, things look good! Answered prayers!! She still has grade 2 reflux on the left side but the right is pretty much normal. Looking back to 2010 she was a grade 4 on the left and a grade 2 on the right. (Reflux is graded on a 0 to 5 scale, with 5 being the worst.) Things have even improved since her last visit about a year ago. Her kidneys are still looking healthy too! Since she still has reflux issues, UTIs can result. Why she went so long without one and then ended up with an infection right before Christmas is hard to say. Dr. Eeg wants to keep her on a prophylactic antibiotic for another six months and then we'll see how she does after that. He is still hopeful that the reflux will eventually correct itself. We are thankful to have that news!

Thanks to everyone for the thoughts and prayers for Luella today! Even though she still had many tears I definitely felt strong in dealing with them and was able to hold it together so we weren't both in a puddle!! We'll spend tomorrow doing lots of fun things at home!! Thanks again!!


Luella enjoying her well-deserved chicken strips after everything was done today! And, no, she did NOT eat all those fries! She maybe ate 5! :-)

Monday, January 19, 2015

A day of tests tomorrow...

Just wanted to post an update about Luella and ask for some prayers as she goes in for some tests tomorrow. Thankfully she has been feeling great since her last illness during the first week of January. She was sick then with a stomach bug and a couple more seizures. You may remember reading about the issues we had right before Christmas when Luella had a UTI and endured five seizures in just 25 hours! It was a difficult illness and so hard to see her have so many seizures in such a short time. I contact her urologist in Sioux Falls and he decided that with Luella's history of vesicoureteral reflux, it would be a good idea to run more tests to see what we are dealing with now. The way things were left at her appointment last spring - we would wait to see him again in 12 - 18 months OR if Luella had any more UTIs. We were encouraged that things seemed to be improving, and they may still be. Her infection in December could have been a fluke, but it's something we need to get checked out.

That being said, tomorrow is the big day. She will have about three different tests done, the last one - VCUG (voiding cystourethrogram), is one she's had done quite a few times but it's also not a pleasant test. We've opted to let them give her a med to make her a little more relaxed during the procedure this time. I'm praying that she will handle it all okay. In the past there's always been many tears during this so I'm hoping the medication will help with that. She will just be outpatient but will have a room up at the castle during the day to prep for the tests and to let her recover a little afterwards. When everything is done we'll have the chance to meet with her urologist to see what the results are. I should have some news tomorrow night.

Thanks for your prayers. The big test will start around 12:30 tomorrow, we'll be there earlier for some of the other testing.

Wednesday, December 31, 2014

A Very Purple End to 2014!

I've been wanting to make a new "purple" video for 2014 for awhile. I've had SO MANY people share pictures with me this year! It's been awesome!! I decided just to make a end of the year video showcasing all of the purple from the past year. I hope I didn't forget anyone!! I tried to save pictures right away so that I'd have them all in one location. If you don't see a picture you've shared with me, please let me know!

This video is to thank all of YOU! Thank you for wearing purple - whether it was a "Little Luella" shirt or something purple of your own! Thank you for helping us raise awareness in 2014!! Thanks to those of you who supported our fundraising efforts also! We were able to send over $3,000 to the Dravet Syndrome Foundation during the year and about $1500 to the Epilepsy Foundation of Minnesota!! In addition, over 200 "Little Luella" shirts have been sold!! I love randomly spotting a shirt when I'm out and about!! None of this could have been possible with out YOU! We can't thank you enough!




If you are viewing this blog post as an email you'll need to click the link to watch the video on YouTube. Thanks! http://youtu.be/uoEIwG_tw2s

Last year's video (2013) can be viewed here: http://youtu.be/m-IdWMaUi_k