Great Weekend, Tough Weekday

Good afternoon everyone and thank you for coming back by to check on Ceci and our family.

We hope everyone had a good holiday weekend and was able to spend some time with family and friends.

😊 Ceci was excited about the holiday weekend because her dad was able to come spend the weekend with her and I went home to spend a few days with our little guys.

Ceci and her dad had a good weekend. They ordered pizza, made friendship bracelets, did facial masks, nails, colored together and watched movies.

It made her day to have one on one daddy time and his silliness always brings big smiles to her face 😁

Hehehe 🐻 she even got him to wear this bear facial mask. And from then on our hard plastic parent couch is now known as the bear cave. 🀣 I love that Ceci and her dad have such a good relationship.

Me and our boys had a great weekend too 😊

I was worried about leaving ceci for a few days, but after a very stressful week full of tears and bad news dad talked me into coming home to rest and of course Ceci was just fine with it once she knew dad was coming.

It was wonderful getting to pick up Aiden and Nicholas from school Friday afternoon and we had a great weekend.

We had laser tag fights in the house, nerf wars in the backyard that left me wore out, movie nights, and spent alot of time hugging and talking.

Our sweet girl is going through so much right now, but sometimes we forget so are our 7 and 8 year old sons.

They are very close to Ceci and being away from us both for so long has been too much.

We have been praying so hard that we’ll be able to bring ceci home soon and our family can be together again 😍

Switching gears to today 😞

We don’t really have anymore answers.

They removed Ceci’s wound vac and compression dressings today and her back looks like it could heal over but she’s still fighting 2 bacterial infections in her back.

So we’re not sure what will happen.

The wound team has covered her back in gauze and paper tape and here shortly we’re going to sit her up to see if the draining is continuing.

Unfortunately Ceci’s awful upper leg pain started back on Sunday night and has progressively gotten worse to today πŸ˜– so the team’s are talking about what to do next.

She may need an MRI to see if the unknown fluid is filling up in her back yet again!

They placed her on a lidocaine patch to try to help with the pain and upped her flexerill.

We can treat the pain the best we can but we need to figure out why in the heck the pain is back again! It’s very frustrating.

She went almost an entire week without the leg.

The last 2 times that her leg pain got this bad, her back needed to be drained again in surgery 😒

After we got out of her wheelchair yesterday evening, it was intolerable. Our poor girl spent alot of time crying until we could get something extra to stop the pain.

Today’s been about the same.

The leg pain is her biggest complaint.

She just finished talking with her counselor and PT is here to work on some stretches so I’m going to go for now.

I need to use this time to work on making a bunch of phone calls I’ve been putting off regarding bills and other unpleasantness.


But I’ll be back soon with another update and hopefully some answers.

Thank you all for keeping Ceci and our family close to your heart and in your prayers πŸ’—

Lots of love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~Spina Bifida Fighters and Survivor ~

If you can, please click on the link below and then hit share from the GoFundMe page, to help- Caring for Courageous Cecilia Marie πŸ¦Έβ€β™€οΈ

We’ve recieved help from so many wonderful friends to help us get through July and most of August and to make sure Ceci has what she needs and we are very grateful for everything.

And I hate to ask for help again but with myself, continuing to be off on unpaid leave and no discharge date in sight 😞 I have to ask.

Thank you to everyone that had shared and continues to share.