Rainy Rough Wednesday

Hi everyone and thank you for coming back by to check up on Ceci and our family.

It’s almost 4:30 here in Rock island and Ceci is sleeping heavily. She has not been feeling well inside again. Her spirit is as happy as always 🙂 and she has a smile on her face,  but she has been hurting again.

It’s been 2 weeks since her last surgery and it looks like it may either be another urinary tract infection or something else that we are yet to figure out. I received a call from Ceci’s school on Monday, from the school nurse letting me know that Cec was running a low grade fever, was having tenderness from her last surgical site with bleeding and was unable to use the restroom.

I made a call to Urology and they ordered another round of urine lab work along with rest at home until we had results. The low grade fever and pain has continued the past few days so I have kept her home to rest until we know what’s going on. Thankfully I have been able to work from home while caring for our girl.

I thought she was doing a little better until she used the restroom about an hour ago. Her urine was the color of Coffee just like last night, and she actually just came to me about 20 minutes ago asking if I could help get her into her bed to sleep. So not like our girl! She never naps even when I try to persuade her that she needs to rest.

I’m hoping we will have a final report on the urine culture tomorrow and we can figure out what’s going on with our girl. She is not a happy person right now, with how much school she has already had to miss. She hates missing class and so far this year she has already missed so much.

It’s another stormy day here in Illinois, which is not anything new lately. We have received so much rain in the past few weeks, which normally I wouldn’t mind. But we have been continuing to clean up our lower level from all the flooding 4 weeks ago, so your can imagine what a pain it has been to haul everything out in the rain. I’m so happy to say that a few more days and we should FINALLY be done with all that mess.

We lost so much, which has been devastating for our family- but we are all together and we still have fight in each of us, so that’s all that counts 🙂 Eventually we’ll work on replacing everything one piece at a time.

We had a pretty good weekend this past weekend. Ceci, me and the boys enjoyed some frozen yogurt and got out of the house browsing the Goodwill’s. Dad had to work over the weekend, which helps with me not working much in the past few weeks with our princesses health, but we sure did miss dad time. So Sunday after I got off work it was definitely family time.

Ceci’s older brother Mikey came by with his sweet girlfriend Kristina and their beautiful baby boy. Yep our little Mike is a dad now 🙂 Which makes me a proud Grandma and Ceci a proud Aunt.

As you can see below, she adores her little nephew Maxten. Dad had a feeling she was not feeling her best on Sunday but I don’t think she would have said a peep even if we asked because she knew that Max was coming by.


Well everyone I better get going for now.

I have much more to share with you all but Ceci is awake and calling for me. Poor girl has a headache now 😦

Please keep her in your good thoughts and prayers.

We were hoping for a calmer fall but so far it’s not looking that way.

Be back soon.

Lots of love and hugs,

Alexis (mom), Ceci Marie and family ❤

~Spina Bifida Fighters and Survivor~





Resting Comfortably

Good morning everyone, mom here.

Sorry we didn’t post another update last night, we didn’t make it home until late and to say ceci was exhausted would be an understatement.

Ceci has been having issues once again with her urinary stoma and the past 2 weeks she had been fighting an infection in her abdomen.

They put her on a 3 day course of antibiotics but things were not getting better.

Cec was also having vomiting and bladder spasms. Urology decided that additional testing needed to done. Monday we went to our local hospital and had chest and abdomen scans done.

We then received a call on Tuesday afternoon from urology letting us know that ceci had a large amount of stool in her in intestines and impaction was a concern.

Since her urinary stoma was also totally inaccessible, bleeding and swollen doctor decided that ceci needed to go into the OR for emploritory surgery to look inside her bladder, try to reopen her stoma pathway and remove any tissue that was inflamed or infected. Thankfully she was able to pass the guide wire through her bladder and get it back through her abdomen.

Peds surgery also consulted on her case, since they manage her cecostomy and joined her urology doctor in the OR.

It was decided that her cecostomy tubing type needed to change. So they removed her mini one button out of her intestine and replaced it with a mic g tube for her irrigation. Thank god, there was not an impaction.

After everything was done Ceci received another heavy dose of antibiotics and they sent her to PACU.

It took her a bit longer then usual to wake up this time, but I think it’s because she’s just been so worn out. It has been a very hard and exhausting 2 weeks for all of us.

Unfortunately we had a bad thunderstorm a little over a week ago and for the first time our finished basement that has 2 bedrooms, a living room, bathroom and exercise room flooded. We had 5 inches in every room and we lost so much.

We have been working nonstop to get everything out and cleaned up, but it’s been heart breaking.

So things have just been crazy around here.

Ceci is doing better today and is resting 🙂 it’s raining again here so I’m sure she’ll be sleeping on and off.

She’s comfortable today but we’re not out of the woods yet.

We have to make sure the g tube will work for her irrigations and this weekend we’ll be removing the tubing in her urinary stoma to see if it’s functional again.

We’re praying that these issues will be resolved and she won’t have to go back in for another surgery.

Please pray that our girl gets better and that she’s out of the woods with these health issues.

Thank you all for thinking of her, sharing her need for prayers and for sending good thoughts her way!

We’ll be back soon.

Lots of love and hugs,

Alexis (mom) and Ceci Marie

~Spina Bifida Fighters and Survivor ~