"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, 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!

http://estellinealumni.com/gazebo-gallop.html

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

REGISTRATION & PACKET PICK-UP:
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.
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1 comment:

  1. AnonymousJune 26, 2012 at 9:39 AM

    Oh guys!!! I'm so sorry to hear this. O2 levels at 40-50%,,,,how scary! I really hope all goes well for you guys this weekend. I am sure it has to be frustrating to try to anticipate every possible trigger that could be causing the seizures even though each situation seems to be different. I'm sorry you guys have to go through all this.

    It is not looking very promising at this time that we will be able to attend the race. Ty has counts on Thursday and if they are high enough then we will be admitted Friday morning. It is possible that they will again be "borderline" and then we would have to wait with the chemo until Monday but we'll just have to see. I am going to be with Ty in the hospital if he does get admitted. Casey, McKenna, Taylan, and the rest of my family will be at the race either way. Ty just gets so sick with this round and I don't function at all if I'm not there with him....he runs 104 degree temps for hours!

    Anyway, sorry to ramble on here. I just wanted you to know we are thinking of you guys. It would be really nice to see all of you this weekend!!! On one hand I'd be happy with borderline counts so I could see everyone but it would also mean more delays and more days of school that will be interrupted. Take care you guys!!!
    Annette

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