Quiet Saturday Morning

Good morning everyone!

Thank you for taking the time to check up on Cec and our family today.

Cec didn’t sleep very well last night, but I think it’s just anxiousness about not knowing if she gets to go home today or if she has to stay until Monday.

We were up early again today and we’ve just been hanging out in her room, waiting to see Dr Reid. We’re passing the time by having an Uno Tournament and watching episodes of Speechless on Hulu.

Ceci wouldn’t eat anything for breakfast but we are working on lunch now.

We’ll update more once we hear what the game plan is.

Fingers crossed for home soon.

Be back soon.

Lots of love and hugs,

Alexis and Cecilia Marie

~Spina Bifida Fighters and Survivor~

Snow Flakes and Super Heroes 😌

Yes those are big snowflakes falling from the sky 😁

~Super Ceci, Spiderman and Captain America~

Our girl finally ate something today!

She still doesn’t have much of an appetite but the wonderful nutrition staff convinced her to order lunch and she ate a chicken strip and had a few drinks of some apple juice.

It’s not much but it’s a start and we’ll take it 🙂

She had some special visitors earlier that made her morning. Captain America and Spider Man came to see how she was doing and chatted with her for a bit.

They even gave her some comic books to take home to Aiden and Nicholas. She thought it was great they showed up to cheer all the kiddos up. We have lots of little ones on the floor today, it was great seeing them smile.

The craziest thing for us is watching it snow here in Illinois in October! It’s been coming down all afternoon and just last week we were in the 90s sweating while we put our Halloween decorations up.

Although me and Ceci aren’t ready for the snow we sure do enjoy watching it come down. It looks so pretty and calm outside. It’s a nice change and some different scenery to look at.

Doctor Reid came up just a bit ago from Surgery to check on our girl and tried to access ceci’s urinary stoma. Unfortunately it didn’t go the way we hoped. When she tried to access it, ceci’s abdomen started bleeding immediately and she was unable to pass it. So she decided she wanted to try again with a much smaller tube.

It was painful for sis but doctor was finally able to pass it and get her pathway back open. She’s instructed us that she wants it left in for now to keep the pathway open and tomorrow we’ll reevaluate. She’ll get another heavy dose of antibiotics this afternoon and another later tonight again while running around the clock iv fluids.

We were hoping to be able to get our girl back home tomorrow but we’ll gladly stay another few days if it means we’ll finally rid her body of these infections.

Child life has been bringing her some activities to help keep her mind off everything and keep her busy. She’s done sand art, painted on little mini size canvases and now she’s coloring and watching Matty B videos on youtube.

Dad and the boys are suppose to be coming up to see us after he gets off work today. Ceci’s really looking forward to a visit from her boys, so we’re hoping the weather will ease up a bit for their drive.

We hope everyone’s doing wonderful today.

Enjoy the rest of your day and we’ll be back later with another update.

Lots of love and hugs,

Alexis (mom), Ceci Marie & family

~ Spina Bifida Fighters and survivor~

Feeling better Friday 😁

Good morning everyone and thanks for coming back by to check on sis.

Things are finally looking better for our girl 🙂

She slept like a rock last night. LOL, she even snored and woke me up. Hehehe this girl doesn’t snore, so she had some catching up to do.

Her abdomen xrays looked good. Her cecostomy procedure that we do every other day is doing its job and emptying out her bowels.

Her blood work showed that she’s still iron deficient but she’s at a level that we can just watch for now. She doesn’t need a transfusion, which is wonderful news.

She’s still getting around the clock iv fluids and antibiotics which is bringing back her color and she said she’s feeling better. Her dizziness has gone away and her urine is clearing up 🙂

Doctor said she was dehydrated and that caused alot of her symptoms.

Her stoma is looking less angry too. The redness is gone and the swelling is going down. The plan today is to have ceci try to catherize through it, like she would normally and see if the internal swelling is easing up.

We need to make sure the bleeding has subsided with this treatment too. Normally with infection she’ll have a little bit of bleeding from her stoma but this time around the bleeding has been out of control. With her already being anemic this has been a big concern.

Fingers crossed tightly for our girl that it’ll be better this afternoon. I’m thinking if we get good results with access, I’ll be able to take sis home tomorrow.

I know she’s ready to get back to our boys and back in her own bed. She heals so much quicker when she’s at home like so many of us.

We want to say thank you to you all for the prayers and for keeping ceci and our family in your thoughts.

The past few months have been very exhausting for us all. It’s hard on all of us seeing sis sick for so long and we’ve had so much bad luck going on.

So knowing you all have our backs means so much 💜

I’m going to sign off for now, but I’ll be back soon with another post.

I need to convince our girl to get some food into her system and I promised her I’d run down to the activity room and grab a game for us to play.

Be back soon.

Lots of love and hugs,

Alexis (mom) and Ceci Marie

~Spina Bifida Fighters and Survivor~

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Our Home away from home

Hi everyone and welcome back to our crazy life 😮😏😪

I wish this was a better post but unfortunately our girl isn’t well. So I’m reaching out to you all for prayers and good thoughts please.

The last time we posted ceci was yet again, fighting off some nasty bacteria’s causing a UTI.

Well since that last post ceci has continued to fight.

It’s been almost a month and we have not been able to get her infection free. Poor girl has been dealing with lots of fevers, vomiting, exhaustion, pain, pus and abdomen bleeding.

We’ve been back and forth to doctors, labs, and the hospitals as well.

3 out of town trips to peoria in the past 2 weeks and then yesterday it was decided she needed to be admitted to the peds floor here at Children’s hospital for around the clock fluids and antibiotics.

Let me just start off by saying thank you so much to our dear friends that talked me into getting her a port. This has absolutely been a life saver this past month. She’s been poked so many times, I can’t imagine what in the world we would do without it. Thank goodness for ports!

Anyway lol, back to our girl.

She’s currently fighting off an E-coli and entercuccis uti.

They are treating her with Rocephin as well as Erythromycin and trying to flush out her system with loads of IV fluids.

We had some complications with her blood pressure dropping very low throughout the night and her body not making enough output, so sis had a very rough night.

We barely got any sleep and we’re still waiting on additional test results. They just did an abdomen xray and she’s due for more blood work to check her levels. She’s been anemic for the past few months so this is a concern right now because of the additional abdomen bleeding.

Ceci barely ate anything for breakfast, but she is awake and watching YouTube videos. I know she’s exhausted but I think she’s worried about what’s next and that’s why she’s not sleeping.

We’re getting ready to do her cecostomy flush this morning and then we’re hoping after getting cleaned up and in a new gown she’ll be able to sleep for a little bit.

I have to drive back to Rock Island for a little bit today, so I’m hoping she’ll sleep while I’m gone. I goofed up and forgot to leave something at the house that was important. So I’m driving back and forth later today.

As of now it’s looking like we’ll be here until at least Saturday and then we’ll reevaluate with her urologist and see if she needs to stay longer.

Thankfully sis is on Fall Break (year round school) right now so she’s not missing more school.

Grandma is with our boys while we’re here and her dad’s working. Im thankful she’s here to help during all this too. I know it’s rough on our boys (including dad) when we’re all away from each other.

Well guys I’m going to go for now but we’ll be back soon with another update.

Please pray that she beats this soon. She’s in good spirits as always but I do worry about her body. She’s been through so much lately.

Lots of love and hugs,

Alexis and Cecilia Marie

~Spina Bifida Fighters and Survivor~

Please don’t forget if you’d like to continue to stay up to date with ceci and our family to bookmark, follow or sign up for email notifications here on her webpage.

We’ll be closing her facebook page soon and our family no longer uses facebook. We’d love to stay in contact with so many of our facebook family ❤