Huge Step for Our Girl

Ceci has been moved off the Pediatric Critical Care floor to the General pediatric floor!

This is very exciting for us 💓 This means that She’s much closer to going home to recover.

We’re day 6 and she’s doing much better than the past few days.

She tolerated having her epidural turned off yesterday and ended up getting it disconnected and removed yesterday evening.

She’s still in and out of sleep throughout the day but she’s managing much better with just oral pain medications, heat packs, and valium to help with muscle spasms in her hips and upper legs.

At this time they believe the spasms are from her muscles trying to get use to the new dramatic way her muscles are sitting.

For so long everything was scrunched together on one side and on the other side are muscles were being stretched to the max.

They hope with time and physical therapy they will slow and eventually diminish.

Today has been a resting day for our girl. Her body is working hard to heal so Cindy said she’s been sleeping alot.

We didn’t get her sitting up in the brace today, but that’s okay because tomorrow physical and occupational therapy will be here pushing her hard.

The plan is to try to get her up, dressed, into her back brace and see if she can transfer herself to her wheelchair while continuing to manage the pain via oral pain medication.

This is the big goal she needs to accomplish before she can go home.

Due to her surgical incision being so long, I won’t be able to lift her like I normally do around her trunk and we aren’t allowed to use her ceiling hoyer lift either until a few months post surgery.

So the only way she can safely transfer is with minimal assistance and trying a transfer board.

Right now this seems to be a fear for sis. So tomorrow will be a hard day for her. She’ll need our prayers and encouragement 💜

Yesterday Ceci’s wonderful adopted grandma miss Cindy came here to Peoria and spent the night with sis.

She loves when they get a chance to be together and I’m very appreciative that I have someone I trust enough to take a step away for a little bit to go home and see our boys.

We spent the day enjoying each other’s company and getting things prepared for school this Friday.

Yep, the kids start school on Friday 😁 My kiddos go year round so they have a much earlier start.

The tricky part is that all 3 kids are going to be going to different schools this year. So I’m still trying to figure out the pick up situation and juggling little miss being here and then home. But we’ll get it down.

The boys are missing their sissy like crazy!

We can’t wait for us all to get together again.

Well Ceci just woke up so we’re going to watch some episodes of Stranger Things and The Fosters together, and try to get her to eat some Dinner.

We hope everyone’s having a good weekend.

Thank you all for your continued support.

Be back soon.

Lots of love and hugs,

Alexis, Cecilia Marie and our special family 💜

~ Spina Bifida Fighters and Survivor ~