"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, September 14, 2012

Thursday was a difficult day...

Yesterday (Thursday) was a difficult day. It started out with Luella getting to go to school (ECFE) for the first time and ended with a seizure that had me in the van ready to race to the ER.

Luella was so excited to go to ECFE yesterday! She's been talking about going to "school" for a couple of weeks. Since we are starting Luella on the LGIT diet (low glycemic index treatment) soon we had to think of how we wanted to handle snack time at school. We decided to let Luella pick out her own lunchbox that she can take to school with her own snack. Luella and I did a little online shopping and looked at several designs. Luella fell in love with a cute little owl lunchbox with a matching backpack to carry it in. She looks SO CUTE wearing that tiny little owl backpack. Once she got it on she would barely take it off!

We got to ECFE and Luella had a GREAT time playing with the toys there. She spent quite a bit of time playing in the "kitchen" and wouldn't let go of the babies once she discovered them. When it was time for the mommies to separate I got her situated with her snack. She looked so sweet sitting there with her little lunchbox, ready for Miss Debbie to read them a story. I wasn't prepared for what happened when I left the room. I was so concerned with educating the staff on recognizing a seizure and for her safety there I hadn't really thought about my own emotions. When I shut that door I just broke down and cried. I felt like it was the first step in a whole new world for Luella - thinking of her being at school!! How will I handle THAT!! This is just a baby step!! I knew Luella was safe and being well-cared for but the thought of letting my baby go, my baby that has barely ever left Jim's or my side, this is going to be hard...

On the plus side, Luella didn't care one bit that I left her. She was happy to be there and excited to play! When we regrouped at the end to sing songs Luella enjoyed listening to the songs but really didn't join in. Later, after supper, she was sitting in her high chair belting out "Twinkle Twinkle Little Star" and "The Wheels on the Bus" all with actions!! It was super cute. We called daddy, who is in New York for work, and she sang to him a little bit.

Fast forward to about an hour after supper... Luella was with me in the playroom and we were getting starting on picking up a box of small toys that was dumped out. Luella stood there looking down at the toys, I looked at her and saw her drifting away. I grabbed her and tried getting her attention but the seizure was starting. This wasn't supposed to happen... she just had a seizure on Sunday night and Jim was gone!! I gave her a dose of midazolam - nothing. Another dose - nothing. She wouldn't stop! I called the ER and told them I was coming. I called Jim's parents and they were on their way to be with the other kids. I gathered our things quickly and wrapped Luella (who was only in a diaper) in a blanket and raced to the van. I was about to start the van and Luella made a sound. I asked her if she was okay now and she very quietly said "ah huh". I cried! I hate this. Why does this have to happen to her?!

We went back in the house. And then I wasn't really sure if the seizure had stopped. Her eyes were little slits and still shifting although she would occasionally grunt in response to a question. Why couldn't this be an "easy" seizure when I'm here alone with the kids!!?? I called Jim. Trying to figure out what to do. Jim's parents got there then too. Now I think maybe the seizure is really done. I called the ER again and talked to the sweet nurse who said they were there if we needed them. I just didn't want to take her if the seizure was done. Then we'd be there - she'd be getting poked and prodded and who knows how long we'd be there. I was pretty sure the seizure was done. I thought the double dose of midazolam probably was what was making her so druggy. Grandma held her while I got the kids tucked in bed then about 20 minutes later the pulse ox was alarming. Luella's oxygen dropped to 80% and her heart rate was up to the 140s. That lasted about 3 minutes. I was about to get the O2 on her and then she kind of sat herself up and things went back to normal. So??? Was she still seizing all that time? Was that just something weird? She seemed to fall into a deep sleep after that. Grandma held her a little longer then I took her so they could head home since all was quiet.

I held Luella about 30 more minutes then decided to lay her down for the night. She did wake up while I was changing her and getting her ready for bed. We rocked then did our normal bedtime routine. "Luella, you know mommy loves you?" Luella - "ah huh". "Have sweet dreams." Luella - "k". She'll be okay.

She had somewhat restless sleep; moving around often during the night. I let her sleep a little longer than usual this morning. When I went to wake her, she sat right up and has been talking non-stop all morning. Thank you Lord!! Days like yesterday keep me in constant prayer all day long. I could not get through it any other way. Thank you to all of you who continually lift our family up in prayer. We feel it! Pray for a miracle for Luella.

I'm so glad Jim will be home later tonight!! AND I'm SO glad to have my in-laws only a few minutes away now!!


  1. Wow Heather! I feel for you. Yes, what a blessing to have your in-laws so close...especially for when Jim is away.
    Bless her little heart! She's adorable! I'm glad the seizure waited until after her first day of "school" was over :)

  2. Wow is right, Heather. What a tremendous gift to have your in-law's in town finally. I can't even imagine what you go through and what an emotional roller coaster it is for you dealing with her seizures too. That's SO great that Luella can enjoy ECFE and be in good hands there too. It's good for BOTH of you. I'm sure you don't realize the amount of stress you're under through this journey either. Let the tears flow, Heather! You need to release too. Hugs and prayers for you and little Luella! Praying her diet will show positive results soon too.

    1. I'm not sure who wrote the comment above, but thank you so much!! We appreciate all the prayers!