"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

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

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