"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

Friday, May 30, 2014

This Girl Can Swim!!

The story behind all of this began almost two weeks ago on Monday May 19th. I had signed Luella's siblings - Burke, Ashlyn and Ryker - up for two weeks of swimming lessons. I thought I had prepared Luella well enough in advance to know that SHE was NOT going to be swimming - that we were there just to watch the others do their swimming lessons. I was wrong. She was not prepared. The second we walked into the aquatics center she was crying that she wanted to swim. And she didn't quit crying. I thought we would have to leave. Thankfully I had my tablet along and she was somewhat distracted by playing a few games but would often pause to watch the pool and cry that she wanted to swim too.

I knew it would probably be hard for her. She LOVES to swim. I had thought about doing the parent / tot lessons with her but they weren't offered during the time the other kids had their lessons. And really, I was nervous to let her in the water. She usually has a seizure when she swims in our indoor pool... and well, really in any pool. Last summer was a little better and she was able to swim in a baby pool in our backyard a few times but a visit to any bigger pool usually resulted in a seizure. I figured I would try to leave Luella home with Jim so I could watch the kids the rest of the week and then the 2nd week of lessons I would just have to miss out on watching since Jim would be gone for work.

On day two of lessons Luella was going to stay home with daddy but she just clung to me begging to go. I was very strict in telling her that she wasn't going to swim and that we would only be watching and if she cried I would have to bring her home. She agreed, so I took her along.  She did better. Not many tears but also not happy. She often asked me if she could swim too. During the lessons on that second day, one of the pool supervisors came in and offered up one of her student lifeguards to do some private lessons with Luella! It was such a amazing and kind offer!! I was really nervous about Luella having a seizure but I told her I would think about it. Jim stopped by the pool to watch the kids for a few minutes and I told him about the offer. He thought we should try it. Before we left I told them that we would give it a try!!

Ready to SWIM!!
I told Luella that she would get to swim the next day and she was SO EXCITED!! When she got up on Wednesday morning the first thing she said was "I go swimming lessons!!" Lesson time came and she was READY! I visited with the lifeguard and explained what Luella's seizures can look like. They were in the baby pool and I was right there watching and had towels, Luella's rescue meds and everything there with me.

Luella was having the best time!! She isn't scared of the water at all and she wasn't exactly "teachable" but getting to have more time in the water was great for her. She did great for about 20 minutes and then she HAD A SEIZURE. :-( I was so heartbroken for her. This is something that she absolutely LOVES and she just couldn't do it! Thankfully Jim was there again to see how things were going and was able to help me. We did have to give one dose of her rescue med and then it stopped. We got her changed into dry clothes and I waited a few more minutes for the other kids to be done with lessons. When we left the pool and I buckled her into her car seat she woke up a little bit. She was so groggy and could barely talk but I understood what she was saying..... "I want to swim." Poor babe!!

I talked to the staff at the pool and the lifeguard and she was willing to give it another try if I wanted. We decided to try one more day. If she had another seizure - we were done. Thursday morning came and Luella was as ready as ever to go swimming!  She couldn't wait to get in the water!! And it was TERRIFIC!! She swam for 45 minutes and didn't have a seizure!! Hooray!! The third day (Friday) was also great!! Luella was SWIMMING and NOT HAVING A SEIZURE!!

The next week lessons started on Tuesday because of Memorial Day. The student lifeguard was finished so the staff at the pool allowed me to take Luella into the baby pool myself! I was a little nervous. We had a break from swimming for a few days... would she have a seizure? Jim was also out of town for work and that had me a little more nervous too. But Luella was determined to swim and she did it!!! ALL WEEK LONG!! Tuesday, Wednesday, Thursday and Friday! NO seizures at the pool! She did have a seizure Wednesday evening at home while playing outside.... but it had been one week since the last seizure - I guess she is consistent with her once-a-week seizures! But thankfully no seizures at the pool!! She even did "learn" a few things.... she can now plug her nose and go completely under the water to pick up rings. She could also lay on her back to back float with some help! I think on Friday she spent more time under the water then out of the water!!

I think her seizure the first day may have been because she was SO EXCITED to go swimming. It had been several months since she had tried swimming  (the last time having a seizure also). The other days... I think the newness had worn off some and maybe she was more relaxed in the water? Hard to know for certain, but I DO know that I probably would not have attempted to have her swim again the very next day had the staff not offered her "lessons" and she would not have had the fun she has had these last two weeks!! We have a terrific aquatics center here and I can not thank them enough for letting Luella experience "swimming lessons" too!!

We are praying for lots more swimming fun this summer!!

I'll leave you with a few more pictures....

Ashlyn, Luella, Burke and Ryker ready for swimming lessons!

A happy girl!

Luella was excited to find a "princess ball" and it matched her swimming suit!!

Having some fun with Ashlyn during Ashlyn's free time.

Head under water finding rings!!!

Thursday, May 15, 2014

Compromise Bill Reached: Our reaction on KELOLAND Tonight

The House and Senate came up with a compromise and Dayton said he would sign it!!! It would provide access for Luella starting July 1, 2015. There will be 2 manufacturers and 8 locations throughout the state. It looks like a good bill! Unfortunately several people with other conditions - PTSD, Traumatic Brain Injuries and intractable pain were excluded. We met some of these people at the capitol and feel bad that they will not get relief. Hopefully everyone sees the great success and they can be added in later.

Here's a link to the Press Conference detailing the bill today - http://kstp.com/news/stories/S3436971.shtml

KELOLAND News was with us this afternoon to get our reaction. There were segments on at 6:00 and a more in depth one at 10:00 tonight. They did a good job with it but they misquoted us as saying Luella's condition isn't considered severe. Luella does have a severe condition and that's why we are so anxious to get a better treatment option.

Here's the 10:00 news story:

Monday, May 12, 2014

A SWEET Fundraiser - Dravet Syndrome Awareness Day

Here's my big announcement!! I'm launching a fundraising campaign to raise money for the Dravet Syndrome Foundation in honor of the first international Dravet Syndrome Awareness Day and of course in honor of Luella too! The first Dravet Syndrome Awareness Day is June 23rd, so get your purple ready!!

My fundraiser is a raffle-type fundraiser with the prize being a cake made by ME! Please view the fundraising website here: http://www.youcaring.com/other/a-cake-4-a-cure/176868

Please Note 
This is basically a local fundraiser since I can't easily ship a cake. I will deliver to Luverne, MN, Sioux Falls, SD and Estelline, SD OR you may pick up in Luverne. If you live outside of these areas you can still make a donation you just will not be entered in the drawing for the cake. Please visit the fundraiser website for more details and to make a donation.

Please share this with your friends and family!! Thank you!!

Friday, May 9, 2014


The medical cannabis bill passed the House this afternoon around 5:00 with a GREAT majority, 85 - 39!!! We are so excited!! Thank you to everyone who supported this effort... with your prayers and contacts to our legislators! We appreciate everyone who took the time to fully understand what this could mean for Luella!! We will be celebrating tonight!! Of course there is still more work to do... a compromise needs to be made between the House and Senate bills, then on to the Governor.

Here is a statement released today from our group....

Put Patient Needs First with Medical Cannabis Law in Minnesota

We are tremendously pleased with the efforts made by lawmakers to pass a functional medical cannabis bill this session. Lawmakers have heard from a series of experts in the field of medical cannabis to equip them to make the right choices. Additionally, they have heard from patients, parents, grandparents, aunts, uncles, pastors, doctors and concerned supportive citizens across the state explaining how this medicine will improve the lives of Minnesota patients for a wide variety of debilitating conditions.

We are confident lawmakers have the information needed to do the right thing for the citizens of Minnesota this session. We are very thankful to the House and Senate for passing bills by such large margins. We are optimistic with the passage of the House bill, the Governor will sign a bill that puts the needs of thousands of Minnesota patients first.

With gratitude,
Patrick McClellan, Jennessa Lea, Barbara Ferron, Joni Whiting, Kendra Miller, Cassie Traun, Maria and Mark Botker, Martha Schulz, Kim and Mark Kelsey, Kathy and Scott Engstrom, Jeremy and Kristy Pauling, Jessica and Jeremy Hauser, Angie and Josh Weaver, Angela and Paddy Garin, Ryan and Jenny Hiltner, Heather and Jim Johnson, Beth and Dan Hundley, Kristy and Mike Kargel, Jonathan Holmgren, Heather Kainz ...

... and thousands of patients and family members of patients.

Thursday, May 8, 2014

Passed Senate... On to House

Quick update.... Luella was on the news again tonight (link below)! The Minnesota Senate passed the medical marijuana bill on Tuesday with a strong bipartisan support! We are so thankful to all those Senators who took the time to educate themselves on this issue and do the right thing!! Now on to the House Floor on Friday morning at 10:00!! Please pray that our Representatives will follow suit.

If you are on facebook you can view an album titled "Our Fight" - it includes pictures of many Minnesotans fighting to get this bill passed and the process so far - https://www.facebook.com/patrick.mcclellan.125/media_set?set=a.10202063083840438.1287168530&type=3

KELOLAND Story: http://www.keloland.com/newsdetail.cfm/luverne-family-hopes-medical-marijuana-passes-house/?id=164203