"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

Saturday, June 30, 2012

Gazebo Gallop (and a seizure)

Last night our hometown of Estelline, SD held its annual Gazebo Gallop - a 5K or 1 mile fun run/walk. This year they turned it into an event to support Luella and Ty (the son of another EHS Alumna who is battling Leukemia). We had a great turn out! It was so wonderful to see all of those who came to support both Luella and Ty. I want to thank all of our families and friends who were there - it meant SO MUCH to see you!

My family (parents, sisters and their babies) with us ready to walk!

 Poor little Ty couldn't be there last night as he was just admitted to the hopsital for another run of chemo! And Luella was having such a fun time running around in the Gazebo just before the start of the walk/run... and then another seizure!! Once again 2 doses of midazolam and oxygen to get her levels back up. Definitely not how I wanted to start the walk. We tucked her into the stroller and decided to do the walk anyway since she was sleeping. Two seizures this week - Monday and Friday. :(

How Luella spent the walk.

So many people have children who are sick. It doesn't seem fair that these little angels should have to suffer like they do. For whatever reason, God gave Luella to us with Dravet Syndrome. We know that there IS a reason and that God is always with us helping us along the way. We feel truly blessed to have Luella in our lives and we thank you all for your continued prayers and support!

Monday, June 25, 2012

Wish we knew the trigger...

Luella had another seizure tonight at 5pm. Outside playing again and having lots of fun, but not unlike many other days during the past week and those days were great. It's just hard to figure out a trigger when there are so many variables... Thankfully this seizure stopped after one dose of midazolam. She did need oxygen though since her O2 dipped down in the 40-50% range for a bit. This one comes only 9 days since the last seizure. We are hoping to get through the activities in Estelline this weekend without a seizure. We are so honored to have our hometown supporting us and the Sichmeller family!! In case you've missed what's going on, here are the details...

T-shirt design!


Fun 5Krun/walk around Estelline that you can enjoy on a Friday evening, also 1-mile fun run/walk around town.

DATE: Friday, June 29, 2012 at 7:30 p.m.

COST: Registration: $15

6:30 @ the Community Center on Main St. in Estelline

AGE GROUPS: 12 and under, 13-18, 19-29, 30-39, 40-49, 50-64, 65+

All proceeds from the Gazebo Gallop will be donated to LUELLA JOHNSON, daughter of Heather (Saathoff – 95) and Jim Johnson (95) and granddaughter of Betty (Seeklander – 74) and Lenny Saathoff and Pastor Gail and Anita Johnson and TY SICHMELLER, son of Annette (IntVeld – 96) and Casey Sichmeller and grandson of Sue (Pedersen – 78) and Dave IntVeld (66).

Luella has been diagnosed with Dravet Syndrome. Her first seizure came at age 9 ½ months, in August 2010, and she was finally diagnosed in July 2011. Her progress can be followed at www.littleluella.blogspot.com

Ty has been battling acute lymphocytic leukemia (ALL) since November 2009. His story is on www.caringbridge.org and type in: tysichmeller to follow his progress.

Monday, June 18, 2012

Seizure in Estelline

We were in Estelline on Saturday - it was Rodeo Days and Jim's brother and family were there too. The kids had fun playing with cousins we haven't seen since last summer. Luella had a good nap in the afternoon then we went down town to the inflatables for a little bit.

Luella initially wasn't too interested but then she did want to jump a bit. It was empty so I went in with her to keep a closer eye. She ended up having a seizure.  :(

I've feared Luella having a seizure in Estelline. There is no hospital in town, although they do have a nursing home. We always have Luella's rescue meds with her and we did bring the oxygen tank too. She needed 2 doses of midazolam to stop the seizure. This seizure was a pretty strong one and she was really wiped out afterwords. She slept for 3 hours and it took another 2 hours to really get back to normal.

I'm more cautious about letting Luella do certain things but she is also a kid and we want her to be able to do normal kid things too. Hopefully there will be a day when we can be carefree again and just let her do whatever she wants!

Monday, June 4, 2012

Seizure today beat me to my good news post

Once again, I was just planning on writing a "good news" post but then Luella had another seizure today. :-( Only 2 weeks since the last one.

Cosmic Bowling
Luella has been doing really well. She has been so happy, sleeping better and having lots of fun. Over Memorial weekend we went to southern Nebraska to visit Jim's grandma. The kids always love visiting their Great Grandma. She will be 96 at the end of the month and she is still in her own home! Pretty amazing lady! Luella had so much fun playing with Great Grandma, they made a little game of tossing a little baby doll back and forth and Luella would just shriek with laughter! During our trip we took the kids bowling. It happened to be Comic bowling with black lights and disco balls. LOTS of visual stimulation and Luella did just fine. She even beat daddy's score (daddy was helping though)!! She was very adamant about using the 15 lb PURPLE ball!

We also took the kids swimming at the hotel pool (indoors). Luella had a blast - no seizures. This pool was rather dark compared to the pool here where she had seizures the last 2 times we visited.

Jim was curious how Luella would handle the indoor pool here again so on Saturday we took her. Burke (Luella's oldest brother) didn't think it was a good idea to take her but Ashlyn (Luella's sister) said "Luella will be fine". I asked her how she knew and she said "I don't know, but I know she won't have a seizure." We started out just out of the water having her look at the lights and she was fine. Then Jim took her in the baby pool, still fine and having a great time. He took her in the big pool for awhile too and she did fine the whole time!! Ashlyn knew! :-)

Luella knows how to keep from getting wet!
Today I let the kids play in the water in the backyard for awhile. Luella was having so much fun but just before we were going to go in, Luella was standing in the water at the end of the slip-n-slide looking down. There was a puddle of water and it was right in the sun, so it was reflecting quite a bit. I noticed her staring down then she stepped sideways and was having trouble standing and I was right there to catch her.

This seizure took a little longer to stop with the midazolam. I was just about ready to give a second dose and the seizure stopped. She continued to have some trouble keeping her O2 levels up so we gave her some oxygen for a couple minutes. After that she was fine and slept about an hour. She wasn't too happy when she woke up. Daddy snuggled with her and watched a little Elmo's World and after eating and a little more TV, she was busy "cooking" in her little kitchen and pretty much back to normal.

We are looking into starting Luella on the Low Glycemic Index Treatment (LGIT). It's a dietary approach to seizure management similar to the Ketogenic Diet only this diet is MUCH easier to start and follow. Many people with dibeates follow this diet and it's been proven to help other health conditions also. Luella has okay seizure control right now but we'd like to make it better and we hate to keep pumping her with drugs. We don't know what the long term effect of all of these drugs will be. We've heard some great things about this diet. I'm not sure when we'll start but I'm pretty sure we will be doing it. We have a phone conference lined up with a dietician from Gillette Children's (in St Paul) next week to learn more about it. If you'd like to read more about the diet check out this website http://glycemicindex.com/.

Once again, we appreciate your prayers for Luella. I don't know where we'd be without prayers!