Good evening everyone, mom here. Thanks for coming back by and checking up on sis and our family.

Today’s been a little of an off day for our girl.

But that started up again last night 😥

Ceci was doing so well over the weekend and was so happy because she had multiple sets of visitors (big thank you to our sweet friends and family for making the drive ❤) come up to spend time with her and distract her from what’s been going on. It was a good weekend and she was smiley until around 9pm last night.

Me and her nurse helped Ceci get out of her wheelchair and back into bed. But within 20 minutes Cec was back in intense pain and the pain was coming from her lower back and her upper thighs.

We gave her some tylenol and waited to see if relief would come.

I noticed that her back dressing was wet so her wonderful nurse Hilary, helped turn and hold Ceci on her side while I began removing all the tegaderm, gauze and strips from her back to see what was going on.

We got everything removed and cleaned her back and I prepped her back to begin redressing her surgical site.

I was just begging to reapply the long stripes of tegaderm over her back to keep the gauze clean and sealed, when I noticed that her drain was leaking around the area the tubing goes into her back.

Within a moment the gauze was completely saturated again and she had fluid pooling under the tegaderm.

Neurosurgery was called down and the doctor came to investigate.

We removed all the back coverings yet again and redressed her wound once more. He also decided to give her drain a little suction to see if anything was pooling in her back again (apparently with how much poured out around the drain insertation area and 🥺).

Within 30 minutes another 100 mls flooded the drain.

Ceci’s pain was not helped by tylenol so we had to give her oral Morphin and within 45 minutes she was fast asleep. That was around about 10:45pm.

Around midnight I was woken by the sound of Ceci crying once more and had to call her nurse back to our room.

Ceci had drained another 60 mls of fluid off her back and the pediatric team was called to her bedside because of the pain and increased fluid drainage.

Another dose of pain medication and within an hour ceci was back asleep until they drew blood work again at 4:45am.

After that she couldn’t fall back asleep so she was up for the day.

The good thing was that her leg and back pain finally gave in so she was feeling better.

We helped her with a bed bath, to get dressed in one of her comfy nightgowns 💜 and she was up in her brace and wheelchair.

She worked with her school teacher, hung out with her hospital bestie Brynne and chatted with her counselor.

Afterwards she ate a good lunch and started working on a Stranger Things poster for her bedroom. But then around 430 she asked to be helped back in bed.

The same situation as yesterday, her darn muscle spasms in her legs.

We gave her some tylenol and heat pads and thankfully that was enough to calm the pain and she’s been asleep since.

Today’s plan is to allow her to rest and control the pain.

She’s scheduled at 9am tomorrow for her next surgery and please Lord- last one for awhile.

We are praying so hard that this will be over soon!

It was kind of a kick to the gut that Ceci did so wonderfully over the weekend and then the pain was so bad yesterday Evening- AGAIN 🥺

Keeping the faith 🙏

Lots of love, hugs and appreciation to you all,

Alexis (mom), Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor~