Better Evening- Our Girl Laughed Tonight 😆

That’s right I got a laugh out of our girl 😂!!!

She had a mean coughing spell after, but it was great hearing her crazy little laugh again.

Best part of my day ❤


Things have calmed down like that usually do on a hospital floor after 9pm, and me and sis are laying down talking about Easter and Aiden and Ceci’s Birthdays.

She’s resting in her nice, comfy, soft hospital bed surrounded by pillows and soft blankies, while I’m laying on this hard piece of plastic that I believe may have once been a punching bag in its former life 😂

Goodness I tell ya…. I think I may buy a quick air up mattress, if Ceci does end up needing to stay through May.

I got up a bit ago to help treat her site again and she told me I was walking like Quasimodo 😂😂😂 stiff joints indeed. Good one sis!


Today was a better day than yesterday.

The only time Ceci was in uncontrollable pain was when the pediatric surgery team decided we needed a new plan of care. They decided to completely remove the tube holding ceci’s cecostomy tract open.

It has been doing its job of keeping the pathway open but, it’s also complicating the situation by heightening her pain.

So after another dose of pain medication and 3 of us talking her through it, we removed the tube.

Again the tube manipulation completely knocked the wind out of her, due to pain but we were so proud of her for being so brave and helping us get it done.

The plan as of now- allow ceci to rest and regain her strength today and tomorrow and then on Friday Dr Robertson will take her back into the operating room to sedate her and explore her wound and if he’s able to, place a new tubing system.

We have to wait to see how things go the next few days and gauge how she’s feeling after surgery.

Then we can reevaluate her plan of care and the length of her hospital stay.


Pediatric orthopedic surgery may also be joining the team during Ceci’s sedation to rescan her tibia fracture and remove her cast.

We were initially scheduled with our local orthopedic center tomorrow for another appointment and set of scans. But with us being an hour and a half away from home that’s not going to happen so Children’s Hospital of Illinois will take over this care too.

Ceci is excited that this may be the last few days that she has to wear this leg cast. She’s ready to kiss it goodbye.


I’m going to try to get some sleep here in a bit and sign off for the evening.

Ceci is already sleeping deeply and I’m having a hard time keeping my eyes open too.

Thank you to everyone that continues to send Ceci E-cards. It really brightens her mood to see the volunteers heading in to see her with a handful of cards 😁 and reassures her that she’s not fighting alone.

I also want to send a shout out to the wonderful staff at ceci’s school for calling to check on her and the wonderful staff from her former Elementary school for doing the same 😌

You guys are very thoughtful!

Thank you.

Be back soon.

Lots of love and hugs,

Alexis , Ceci and our family

~Spina Bifida Fighters and Survivor~