1st Night at Home

Good morning everyone 😊

I’m so happy to be writing this update to you, all from the comfort of our home.

The drive home was a little rough on Ceci but we made it safe abd sound.

She slept for 30 mins of the drive, so that helped. There’s a huge bump on I-74 heading home that I knew would be too much on her. We hit it and it woke her. But we were close to home so I was able to give her pain medication.

I stripped her bed and put clean blankets down and got get into her bed while I unpacked everything.

I had to have dad run out and grab a dry erase board for her room because they added 6 new medications to her already crazy medication schedule.

There’s so many things to keep track of right now. 2 sets of wound dressings for her back- one for the surgical incision that has to stay completely sealed that has to be changed every 2 days and the other for her skin tears that have to be cleaned and covered everyday.

I have to keep track of her urine output and track of fluid intake as well.

Lots of recording to do for the next few weeks but I’ll get it down 😊

I’ll continue to take unpaid leave from work until Ceci is able to do more for herself. Right now it’s all hands on deck and she need loads of help.

It’s very frustrating to Ceci because she can’t even adjust her body’s position in bed. Last night she had to wake me 5 or 6 times to reposition pillows and heat packs. I told her not to worry we’ll get through it but at one point she was crying because she was in pain and very frustrated.

I know it’s overwhelming for her. I can’t imagine being so restricted πŸ˜₯

I just sent my babies off to school a bit ago. This is Aiden and Nicholas’s 2nd day back at school and I’m very grateful for my mom at this time.

Ceci can not be left home alone for any amount of time, so she’s coming in the mornings to take them to school and in the afternoons to pick them up and drop them off at home. Helps tremendously!

Me and ceci have been up since 6 after a long and not very restful night, so she’s ready to nap.

I’m going to fold some laundry and try to rest while she is.

I have many cheer mail calls to share later today so we’ll be back 😁

Please continue to keep this brave girl in your thoughts and prayers.

Lots of love and hugs,

Alexis, Cecilia Marie and our special family πŸ’œ

~Spina Bifida Fighters and Survivor ~


Amazon medical wish list for ceci’s needs-


6 thoughts on “1st Night at Home

  1. Shayne Frankel August 5, 2019 / 2:42 pm

    You are both so very AWESOME! No mountain is too high to stop each of you from taking life one step at a time. As you described the bump in the freeway on your trip home, I was gritting my teeth — can’t imagine what Ceci did (or thought of doing)!!! Hope the new schedule soon feels like an accomplished routine – one with a huge light at the end of the tunnel, when Ceci will be sitting upright without the brace! Loving hugs Shayne

    Liked by 1 person

    • Ceci's Courage Crew August 5, 2019 / 4:56 pm

      😁 we can’t wait to get to the end where the light is shining through. We know it’s going to be a hard journey but it’s well worth what’s coming at the end.


  2. Brad Hilligoss August 5, 2019 / 10:29 am

    glad to hear you are both home safe and sound. if you need anything let me know.

    Liked by 1 person

  3. Juanita Moore August 5, 2019 / 9:09 am

    So glad you made it home safely. I will continue to pray for Ceci and all of the family. I know it is rough right now, but it will get better. Love you guys!

    Liked by 1 person

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