One Day at a Time

These past few days have been so unexpectedly hard….

On top of everything that I wrote in our last post with Ceci and her bedroom floor, I did something so stupid but so quickly that I didn’t even think about what could happen 😖

I bent over to try to pick up Ceci’s sweet little brother Nicholas off the couch, to wake him for school and……. OUCH!!! I threw my back out 😭

Really I know better than this. I lift Ceci up at least 2-3 times a day and she’s over 100lbs now that she’s almost 14.

So lifting the right way is frequently on my mind to prevent this from happening . So once the awful surge of pain struck I wanted to scream and curse myself.

With everything going on I can’t believe I did something to make our situation a bit harder right now. 🙄 yep leave it to me.

I’ve been icing like crazy, taking 800 mg of ibuprofen and trying to rest. I did make it into the chiropractor today and I’ll be heading back tomorrow.

Hopefully with treatment I’ll be back to normal soon.

I definitely do not have the time to be injured right now.

On a good note 😁 Ceci had a good day today.

Her site is still leaking a ton so we’re doing dressing changes, bag changes and checks every so often but her pain was nonexistent today.

She’s eating much better and she starting to look like her old self again.

She was so happy because she finally got to change out her earrings for a fresh pair. Before she got real sick and I believe before she broke her leg again, ceci took her babysitting money and did something shes talked about doing for a long time.

She got her ears pierced again. So she has 2 sets of earrings in her ears. Hehehe 😊 it was so sweet because she waited so long to do it.

She was so excited because she did it when her girlfriends came to stay. So they were there for moral support. One of her friends was home sick so she even video called in, to be there for the big event. Ceci has such sweet friends 💜As her momma I’m very grateful for that.

We continue to take it a day at a time. Ceci’s looking better but with the amount of leakage still occurring out of her side, I’m worried that it’s taking too long to heal.

We had hoped by now we’d only see minimal leaking but it’s still about the same as when we were in the hospital.

We head back to Peoria next Thursday to see Pediatric surgery to reevaluate her side and her care.

If it doesn’t heal and seal off by then, I’m not sure what would be next. Which is hard for me to admit because I’m so use to knowing what’s coming.

Ceci’s health is so complex that I’ve learned so much about her care over the years. Even when it’s not text book compliant I know what to expect and I have taught myself to ask many questions so that I am able to predict what’s coming.

But this time I’m not sure…..

I’d hate to think that Ceci might lose her Cecostomy site. She’s had it for many years and it’s truly been a godsend for keeping her out of the hospital due to bowel obstructions and blockages.

And with us having to let her urinary stoma close off earlier this year due to all the infections, this would be another punch to the stomach when it comes to Ceci having the ability to be independent.

Please pray that healing to her side wound will speed up and that Ceci won’t have to go through anymore surgical procedures until her spinal fusion in July.

Well my ice pack is most definitely cold again, so it’s time to hobble to the freezer and then to bed.

We hope that everyone had a good day today and nothing bad made its way across your path.

Thank you for continuing to check updates on Ceci and our family.

And another great big thank you to everyone that has continued to help our family financially by donating to our families GoFundMe account and for sharing the link on your social media ❤

Thank you dearest friends. It means so much to know that others understand how hard this situation truly is right now. I haven’t been able to work since the beginning of April so it’s been scary. So thank you again.

I have my ice pack so it’s time to look at pinterest for birthday surprises for Aiden and then I’m hoping for some deep sleep.

Oh good old Pinterest, how you always keep me up late.


Ceci’s little brother Aiden is turning 8 years old on Sunday and our family is excited.

We aren’t going to be able to have birthday parties for the kids this year (aiden on 4/28 and ceci is on 5/13) but we’re all very happy we’ll be together.

Originally with Ceci’s spinal fusion date, we would have been in the hospital up in Peoria for both big days so we would have been apart. Being together for both means alot to us.

Be back real soon.

Lots of love and hugs,

Alexis, Cecilia Marie and family

~Spina Bifida Fighters and Survivor ~