"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, May 21, 2012

Almost made it 4 weeks....

Well, I was hoping to write a post tomorrow saying we made it 4 weeks without a seizure, but Luella had one this afternoon at the park. :( She was having such a great time swinging, going down the slide and running everywhere. We were just about ready to head home and Luella ran across the park to where we left the stroller. On the way, she ran across the basketball court and just sort of stopped and her arms went out to the side and her head was up. I immediately ran to her and looked at her face and saw she was seizing, then she started to fall back into my arms. The seizure turned into a tonic clonic and she was quite stiff as I got her to the shade. The kids brought me the bag with her meds and one dose of midazolam did the trick. Of course I was nervous being away from home with only the stroller and all 4 kids. I called Jim right away but she was okay so we headed home on foot.  She is still post-ictal as I write this, sleeping in my arms. Poor little babe.

For the most part we've had a good 4 weeks though. Luella went through a phase a couple weeks ago when she wasn't sleeping well at all, more cranky, not eating as well again... Poor daddy was up almost 4 hours with her one night!! That prompted Jim to want to get a depakote level done again. We suspect that her depakote was out of whack again. I took Luella in last week Tuesday for a blood draw. They tried 3 times and couldn't get a vein. It was getting late, she needed her morning meds and we didn't want to put her through any more pokes so we decided to try again the next morning. I couldn't go through that again so Jim took her on Wednesday morning. Once again, they couldn't find a vein so 3 pokes later and after waiting longer for the anesthesiologist to try they were finally able to get blood. I hate that Luella has to deal with Dravet and all that comes with that but on top of it she has to have terrible veins too! We hope to have the depakote results in the next day or so.

Luella has been doing well despite this seizure today. Last night she was picking on Ryker - tapping his back as he watched TV, when Ryker would turn and give her a "look" - she would just shriek with laughter. We LOVE to hear happy Luella!! In these past 4 weeks, Luella has enjoyed the circus, played outside many times, taken trips to the park, played in the sandbox and learned how to pedal her tricycle by herself. Also made a trip to grandma and grandpa's farm and got to feed some bottle lambs!

We are thankful for every day with Luella but we especially enjoy seeing her having fun. We thank you for your continued prayers for Luella and our family. Hope you enjoy these pictures and videos of Luella having FUN!


Feeding bottle lambs at grandma and grandpa's.

Hello there!

Play-doh time!

Luella LOVES music!!

Playing in the sandbox with brothers and sister.

Daddy and Burke teaching Luella the finer points of Chess.
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Video: Luella riding her tricycle. She doesn't steer so well, but daddy says... she IS a girl! Oh, that daddy!!

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Video: Love Mommy, Love Luella