Wish I had Better News

I wish I had better news.

Ceci is not doing well today. I thought she was okay this morning but her pain and nausea has been too much.

She’s been in and out of sleep all day and we did not work with physical or occupational therapy today because she’s too weak, exhausted and in too much pain.

We ordered breakfast but she only had a bite or 2 before she needed zofran and the head of the bed back down. She’s been sipping a drink here or there but not what she needs to be getting into her system.

She refused to order lunch and she’s sleeping again after only being awake for 15 minutes.

Peds surgery is now on her case as well, due to the issues that we are STILL dealing with regarding the opening in her side from her hospital stay back in April and it not closing. Because of this we’re worried about a higher risk of infection to her back. So they will be following her too.

😔 We discussed the fact that Ceci is going to need ANOTHER surgery 😔

She’ll need another surgery to close her side off and one to help manage her neurogenic bowel and bladder. It won’t be scheduled until she heals from this thank goodness, but just thinking about it is so darn frustrating!!!

The bigger issue is it’ll be further from home. It sounds like when it is time too schedule these 2 surgical procedures to be done together, we will go up to Luries Hospital of Illinois in Chicago. It’s about a 3 1/2 hour drive one way for us. More distance between our family 😖

On top of the battle she’s struggling with right now to heal, we found out Cec has another urinary tract infection. So they have started treating her with antibiotics and hope it will also help ease some of these symptoms.

*sigh*……. I’m also frustrated with myself right now. I made one of the biggest rookie mistakes as a momma of a teen that needs a little extra help with lifting and that sorts due to her paraplegia, and I hurt myself!

I was trying to move her across the bed gently and did not lift correctly and I’ve pulled something in my back 🤕

As you can imagine, that’s making things a bit harder. I still can’t believe I did that! So I’ve been trying to ice myself as well in between her naps and im taking ibuprofen. But my sciatic nerve is very angry and causing some ruckus.

On a brighter note ❤

I want to thank everyone that has been sharing our journey and our strong girl with family, friends and even strangers asking for prayers and support.

The outpouring of love and support has been tremendous and reading the comments of love and encouragement has been uplifting for Ceci and our family. Thank you 💓

😊 I also received a report from home today from ceci’s little brothers Aiden and Nick, that Ceci has a pile of cheer mail on her desk at home waiting for her.

That brought a smile across her face when she was awake and reminded her that she has her Courage Crew cheering her on.

She’s also been recieving some sweet E-Cards here the past few days as well. ❤❤❤ You guys rock!

I’m going to sign off for now but I’ll update again soon hopefully with a much better post regarding Ceci. It’s so hard seeing her like this.

Please pray for some better hours ahead.

Be back soon.

Lots of love and hugs,
Alexis, Cecilia Marie and our special family 💜

~Spina Bifida Fighters and Survivor ~


Cheer mail address for sis:

Cecilia Marie
915 8th street
Rock Island, IL 61201

Better Morning for Sis

Last night was a very rough night for Ceci but this morning is going better.

She had some breakthrough pain that hit a high of 7 on the pain scale but we managed to get get back to 3 today.

Much better for sure!

Right now we’re waiting for the peds doctors to come around and then we’ll be working hard on getting Ceci moving a bit more with physical and occupational therapy.

We’ve ordered some breakfast and the tech is going to help me give her a bed bath and get her dressed in loose fitting pants and her compression tank top so we can also get her into her back brace.

We also will be changing her back dressing today and taking a look at her incision to make sure everything is still closed up and sealed tightly.

It’ll be the first time I see the entire incision. Honestly I’m a little scared. Poor girls incision is so long 😞

Well guys it’s going to be a long, busy morning for sis so I’m going to go for now.

But we’ll be back later this afternoon with another update on her progress and her pain level.

I just wanted to let you all know she’s doing much better this morning ❤

Lots of love and hugs,

Alexis, Cecilia Marie and our special family 💜