"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, 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

Thursday, December 25, 2014

A Very Merry Christmas!

Luella followed up her crazy Tuesday with just one seizure on Wednesday morning.  She ended up sleeping really well Tuesday night. I woke her around 3 am for more ibuprofen but she went right back to sleep. Despite keeping her on a schedule of ibuprofen and acetaminophen she still spiked a fever about an hour after her morning dose of ibuprofen which resulted in a seizure around 10 am Wednesday morning. After she slept most of the morning she started perking up around noon and was so chatty at lunchtime, she hardly ate anything! She hasn't had a fever or a seizure since! We were supposed to go to Christmas in South Dakota with my side of the family on Christmas Eve and since Luella seemed to be doing so much better, we decided to go! She had such a fun time! Santa even popped by grandma and grandpa's house! Thank you so much for keeping Luella in your thoughts and prayers - they got her through this so quickly!

The UTI has us wondering about her bladder reflux. Based on her last visit with the urologist we thought we were clear of any more issues. She is scheduled for a follow-up with her urologist in the spring. We will be contacting him to see if he wants to see her sooner.

Precious Ruby - the little girl I mentioned in my previous post, went to be with Jesus around 3am on Christmas Eve morning. I can't imagine the loss and heartache her family is experiencing. At this time when we should be celebrating the birth of our Savior, they are mourning the loss of their daughter. Please continue to keep the Hanson family in your prayers! http://www.caringbridge.org/visit/rubyeclipse

I want to leave you with a happy memory... While in Florida for Luella's Make-A-Wish trip we had a Christmas celebration at Give Kids the World Village. We got to meet Santa and Luella was mesmerized by his beard! Merry Christmas everyone!

Luella loved Santa's beard!
More memories from Florida on our Christmas card....

Wednesday, December 24, 2014

4 Seizures on Tuesday

I suspected something was up with Luella on Monday when she was running to the bathroom frequently. It was later in the day when it was really apparent but I thought we'd wait and see how things were Tuesday morning. She was awake in the middle of the night with a fever. Jim gave her some ibuprofen and she settled in and went back to sleep. When she got up Tuesday morning she was chipper and singing. I took her temp and she had a slight fever. I figured she probably had a UTI (urinary tract infection) so I called and had an appointment lined up for 11:15. Between 9:00 and 9:30 Luella had two seizures. Thankfully both were short and no rescue meds were required but they were both tonic clonic and so hard to watch. Her temp had gone up pretty quickly which triggered those seizures. She was hard asleep after those seizures and we couldn't get her to take anything to get her fever down. When we were moving her to go to ER she did wake enough to take some medicine at home so we were able to just let her sleep at home and let the ibuprofen do its job. At 11:15 we went in to see the on-call doctor. Luella slept through most of the visit. She woke enough to get a urine sample and then was out right away again. They confirmed it - she does have a UTI. We have her on an antibiotic now and are actively battling these fevers, trying to stay on top of them with ibuprofen and acetaminophen. Unfortunately the acetaminophen doesn't appear to be helping much so we are trying to time the ibuprofen so that we stay on top of the fever but not give her medicine too much before the next dose is due.

At bedtime on Tuesday her temp started climbing again so we gave the ibuprofen right away but the fever won and she ended up having two more seizures within a 30 minute time-span. Again, thankfully these are all resolving without rescue meds or we'd be in the hospital by now. I'm asking for prayers to get her through these fevers and hopefully the antibiotic will kick in quickly.

On top of Luella's UTI issue today, I learned about another Dravet princess, Ruby, who is losing her battle. I'm in tears tonight as I think of the agony her family must be in. They are planning to disconnect her life-support today - on Christmas Eve. :-( Her situation all started with her getting influenza A. So scary how that could turn into something so devastating. Please pray for Ruby's family and also for Luella.

Sunday, December 14, 2014

Seizure Tonight

Well, I was hoping to post tonight with the title "No News is Good News" but instead I'm announcing a seizure tonight to end an EIGHT week stretch! While I'm sad that the seizure-free run ended, getting to go EIGHT weeks without one was such a blessing! All summer we were in such a weekly routine. It's been great to watch her having fun and not having it interrupted by a seizure.

The seizure tonight was a tonic clonic (grand mal). Always hard to watch but thankfully it lasted less than two minutes and she didn't need ANY meds to stop it! It stopped on its own! We were just getting ready to sit down as a family and watch Home Alone with some popcorn. She slept a little bit and then was groggily watching the movie for awhile. Soon she was eating popcorn and giggling at all the crazy stunts Kevin pulled on those bad guys! Such a blessing to see her bounce back so quickly!! A friend just messaged me tonight telling me Luella was on her mind. I have no doubt that God answered her prayers and the prayers of all of us! We thank you all for continuing to keep Luella in your prayers. Dravet syndrome is a battle that we aren't going to stop fighting and we are so blessed that so many of you are prayer warriors for Luella!

This seizure won't discourage us...

                            May the God of hope fill you with all
                                                                joy and peace in believing,
                                                 so that by the power of the Holy Spirit
                          you may abound in hope.

                                                                                                        ~ Romans 15:13