Ceci needs your help â¤

TeamCeciStrong needs your help.

Any Fundraiser angels and brain stormers out here?

Hi guys, mom here 😊 so much going on today but I wanted to get this out here to see if anyone would like to join a special cause for sissy and our family.

I was contacted a few days ago by a very kind friend that asked for our Family’s blessing-to organize an event in honor of Ceci and our family to help us with some of the financial burden we are struggling with.

It was very kind, since I’m going to be very busy with Ceci’s care for a bit when we come home.

We are honored ❤ and of course passed our blessing along.

She is working on something special to help, but she’s looking for friends to be part of a fundraising committee. (Please see the picture below to read more).Her name is Tessa Adams and contact information: Tessa_handinhand@yahoo.com or text or call @ 309-948-1966

Whether it be brainstorming ideas, offering up a location for an event, donating a service 😁, offering donation of a raffle basket or Silent Auction, helping with food or any other help- it would be greatly appreciated.

As you all know with our girl fighting strong against so much this past year, I have missed a large amount of work from my fulltime job and I ran out of FMLA leave this past August.

Gratefully I was granted A Leave of Absence but if I am unable to return to work next week I will lose my job.

During this medical battle as our sweet girl fought for her life, I’ve missed over 2 months of wages and it’s put us in a hard situation financially.

Our insurance premiums are behind by $494.46 and I owe another $329.64 for October since I have not worked since the beginning of July. If this is not sorted out we will lose insurance coverage.

Honestly, our financial situation is very scary at this time 😥

I don’t want to go very deep but I’m trying to not be ashamed and admit- We Desperately Need Help.

Cecis continuing to heal and will have a long road to recovery when I bring her home.

I wish bringing her home meant she was healed and this is all over…. but it’s just not the case.

She has a long road to recovery ahead. Many Peoria follow ups, routine lab work, IV infusions at home, physical therapy, occupational therapy, and future surgery to remove all her spinal hardware due to colonization of bacteria.

I’m so proud of this girl and the strength and courage she’s shown through the hardest medical battle of her life and no matter what it causes us to lose, I’ll always be by her side 💜

Our family is eternally grateful to everyone that has been kind and able to donate to her GoFundMe campaign, help with gas cards, meals, deliver household items, medical supplies for sissy and help us just maintain.
You guys are the reason our situation isn’t 1000% worse.

If your able and would like to dedicate time, love, services, a space or items to planning a fundraiser benefit- please contact Tessa Adams and let her know you’d like to be part of Ceci’s Courage Crew Fundraising Team.

Feel free to share with anyone else you believe may be able to help.

🥰 In the mean time she does also have a Origami Owl event going on in her name:

https://tessajo.origamiowl.com/shop/party/526165

Thank you dearest friends and thank you Tessa for reaching out.

Tessa’s post

Good evening everyone, mom here 😊

Quick update on our girl before I head to bed.

Ceci is doing much better this afternoon and evening.

Yesterday evening was hard for our girl between the vomiting and stomach pain.

We ended up video chatting for over an hour and I was close to driving right back to be with our sweet girl when the Reglan and liquid Morphine finally kicked in and she told me to go to bed 😊Lol.

After that the nurse told me she slept soundly until 4am.

The girls video called me again at 4am regarding some issues with her side wound (from where her cecostomy use to be) but we got it all figured out and she was able to get back to sleep until 6am rounding.

They tweaked some more of her new medications again, gave her another IV Bolus of fluids and today was sooo much better.

She didn’t have any repeat stomach pains, vomiting and the nausea is gone 😁

She hung out with these wonderful volunteers today (picture below) and even met some new patients.

She made friends with a sweet little girl that’s her brother Nicky’s age (7) and I heard she was very helpful in distracting her from having a blood draw.

Being in the hospital for over 2 months now and meeting other kids here, brought sis to a realization tonight and it was wonderful to hear all about it.

As we video talked before bed Ceci told me she finally knows what she wants to do when she grows up.

She wants to go go school to become a Child Life Specialist and work with kids on the pediatric floors to bring them happiness and smiles in the hardest times.

Cec adores all the amazing gals that work at the hospital as Child Life Specialists and she said seeing the way they can bring happiness and big smiles just inspired her.

We love those wonderful ladies!

I hope that Ceci pursues this dream. I know she’d be great at it!

Well guys I just talked to dad and him and Ceci are getting ready for bed. So I’m going to get these hyper little guys settled down too and get some sleep myself.

I just wanted to let you all know our girl is much better today 🥰

Have a wonderful night dear friends.

Lots of love, hugs and appreciation,

Alexis (mom), Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

http://www.gofundme.com/supporting-super-ceci

TeamCeciStrong

HomeBoundSoon

Happy Thursday

The many faces of Ceci 😜

Good evening everyone and welcome back 😁 mom here. Hope everyone’s having a good Thursday night.

I’m home with the guys watching Thursday night football of course, and enjoying some snuggles.

I came home to go to Munchkins for Mom’s at Nick’s school today and also to begin our preparations to bring sis home this Tuesday 😁

Me and 2 of my boys ❤

I spent around 6 hours today scrubbing Ceci’s room, unpacking all the medical supplies and goodies from our friends at Jordan’s Joy, washing bedding, and reorganizing all her medical necessities.

I have a few more things to do here and then we’ll be set for our girl’s homecoming.

Me and Ceci video chatted all day and she was super excited because she had 2 of her favorite student nurses working with her or should I say hanging out in the morning and this evening 😁

I received a call from her and her nurse around 4pm to tell me that Ceci had vomited 😳 of course that threw me off.

They ended up ordering another IV Bolus of fluids for her since her hydration is still a big concern and with her vomiting it heightened her team’s worry.

Then around 7pm I received another call- Ceci threw up again even with a dose of Zofran in her system.

The nurse said she didn’t want to get out of bed today, acted more tired then she has been and didn’t eat much today.

I spoke with Ceci again this evening and she told me not to worry she’s fine.

So I’m a little lost on what’s up with our fighter.

Dad’s going to be heading back to her tomorrow evening and will stay with her until Sunday. But if anything changes one of us will be heading back sooner.

Please continue to pray that nothing new is brewing with our girl. It would crush her if she’s not able to come home on Tuesday. 🙏🙏🙏

We’re hoping it was just something she ate that is leaving her tummy a little sour.

Before I sign off I want to send another big thank you to Cathy Bonta for bringing smiles to our family tonight and delivering Pizza Hut so we didn’t have to worry about dinner.

Thank you very much friend ❤

I’ll be back soon and even sooner if anything changes with our girl.

Lots of Love, hugs and appreciation,

Alexis (mom), Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

www.gofundme.com/supporting-super-ceci

https://www.mealtrain.com/trains/0y3kl5

Good Wednesday

Good morning dear friends and welcome back to Ceci’s page.

We hope everyone had a good evening and are having a nice morning as well.

Ceci’s been doing well today. She just finished doing her school work with our wonderful hospital school teacher Mrs. Lauren, ate breakfast and now she’s hanging out with the wonderful crew from Child Life.

Ceci’s sitting up in bed, with the help of these amazing pregnancy pillows that some very wonderful friends got her from Amazon 💜 and she’s painting some mini canvas.

We’re going to get her cleaned up in fresh jammies soon and work on getting her up in her scoli brace and in her wheelchair.

We’re hoping to get her back outside for some more fresh air and if it’s not too windy play another Uno tournament. Ceci loves Uno.

So we’ve been playing loads of games of Uno, Yahtzee and Ellen DeGenere’s game of Heads Up on Ceci’s phone.

Yesterday was mainly a good day but we are still struggling to get Ceci’s to get her required fluids down ☹ and she’s still having these bouts of dry coughing and awful pressure headaches.

We had 2 pretty bad episodes of headaches that knocked her down pretty hard.

The 1st one occurred when she was playing Wii so she had to tilt back her wheelchair as much as it would allow and close her eyes and wait for the Tylenol to kick in.

The 2nd one occurred while we were outside yesterday evening on the rooftop garden. We watched the sunset and were enjoying a round of Heads Up when she couldn’t take the pain anymore so we headed back to the unit.

It got so bad that we needed to help her get back into bed and get her an extra dose of pain medication to manage it.

Within about 25 minutes of laying down she was feeling better and she slept well until the 5am rat race began 😊

That’s one thing I won’t miss when we get back home. The 4:30 am and 5am wake up calls from multiple teams.

Thank you so much to everyone that answered my call for help regarding good water bottles. With Ceci struggling so much with her water intake I appreciate the tips, tricks and suggestions. It was very helpful friends.

We talked with the teams today and unfortunately were told that if Ceci can’t get the recommended intake in each day then they’ll have to schedule IV infusions of fluids every few days. Soooo to say this is a very important task for her to complete, is an understatement.

We got into several little arguments the past few days because I’ve had to be like a little chirping birdie in her ear repeating the phrase- Cec drink, Ceci drink- over and over again and I’m getting the feeling she wants to swat me.

I hate having to nag her and I know she hates it too.

We had a great suggestion for a high tech water bottle that not only will report how many ounces she’s getting down everyday to my phone (we have to track this), but will also remind her when it’s time to drink- by blinking until she takes a sip.

So no more- Ceci drink- chanting and she would have more control over her goals.

I checked it out and it’s amazing! It’s sold by Amazon and is called the Hidrate Spark 3 and runs $55 a bottle. Quite a bit of money but I think it would be a very helpful investment and could prevent her from needing repeated port access and IV fluids. Once I get back to work in October I’m hoping to purchase 2 of them. One for home and one for school once she’s cleared to return.

We’re so excited about sis’s anticipated discharge date.

I’m going to head home tonight once I get our girl settled, to work on getting her bedroom cleaned and disinfected very well and get it welcoming for her return 😍

The medical supply company we’re working with is also suppose to be delivering some items to prepare for her return.

And then of course 🥰🥰🥰 we’ve begun receiving so many happy tear inducing Amazon packages, full of needed medical supplies from our amazing friends from Jordan’s Joy Foundation. ❤❤❤

As a special needs momma I’m excited about getting things together, organized and built to suit all her new needs. Lol, I know the things I get excited about. 🤗

Well guys have to run for now. We’re getting our girl up and ready to move.

Y’all have an amazing day!

Lots of love, hugs and appreciation,

Alexis (mom), Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

TeamCeciStrong

FaithOverFear

http://www.gofundme.com/supporting-super-ceci

Planned Discharge Date

Happy Dancing 🤗🤗🤗

We finally heard what we’ve been waiting to hear.

We can start Ceci’s Discharge process!

🤗🤗🤗🤗

There’s a lot of people to talk to on her team’s to prepare- Neurosurgery, Orthopedic Surgery, Palliative Care, Pediatrics, Internal Medicine, Infectious Disease, physical therapy, occupational therapy, transitional care, and pharmacy.

But the process is being started today!!!

Fingers crossed and many prayers that Ceci continues to beat this and doesn’t hit anymore road blocks 🙏

😁 She’s coming home just in time for our favorite Month- October.

October of course has one of our favorite holidays- Halloween plus it’s finally fall our favorite season, but it’s also our favorite month because…….

It’s National Spina Bifida Awareness Month 💙💙💙

TeamCeciStrong

SpinaBifidaAwareness

FaithOverFear

Sunday Fight Day ðŸ’ª

Good evening dear friends and thank you for coming back by to visit.

Your prayers and good thoughts helped yesterday evening and our girls heart rate is much better.

She’s still tachycardiac but we’re down to 120 again 🙂 plus no more headache today!

They did end up having to give her 2 -IV Bolus’s over 2 hours last night but it did the trick. So dehydration seems to be what was causing her heart to need to work a bit harder.

But we are not sure what’s causing the dehydration. She’s been eating and drinking just fine so that doesn’t seem to be the cause.

It could be the UTI or it could be the 2nd shunt. We’re a little stumped.

So they’ve been watching her heart rate closely and when she gets to go home we’ll have to watch closely there as well. It’s been the only indication when her body needs a little help.

Me and dad switched back off this afternoon and I’m back with our girl and he’s home with our boys.

It’s one of the hardest parts for us, being separated. Saying our goodbyes to each kiddo and having to wait another week before we see the other kids.

But we have faith we’ll all be together again soon 🥰

I had to share this picture with you all.

Ceci was so strong today and fought through the pain to get into her scoliosis brace for the first time since her last surgery.

She’s so freaking strong!

We covered her staples and stitches sites with foam bandages to protect them from being pulled out and we worked to get her into her “Stranger Things” shell 👾

She sure did bling out her scoli brace with what she loves.

I was able to turn her sideways on her bed, with her legs hanging down and we worked on finding her new balance since they fixed her curve.

She was having thigh pain but we believe it’s her muscles working hard since she’s been pretty much bed bound for 2 months. So I’m sure her muscles are screaming.

She’ll have to start Physical Therapy once she gets the okay, to retrain all her muscles. She has to wear her scoli brace until the end of October send then the intense physical therapy will start.

It’s going to be hard but Ceci says she’s ready. She’s ready to heal and get these muscles in check so eventually we can look into getting her into a wheelchair basketball league. She loves to play 🙂

Our strong girl lasted a whole hour sitting up in her brace today.

Huge accomplishment!!! I’m so proud of her ❤

Tomorrow brings another day and another challenge.

We’ll be working on getting Ceci back into the brace and see if we can get her into her wheelchair.

We need her to be able to sit up in it for at least 2 hours. If we can get her there we’re even closer to taking our sweet girl home. The drive is 1.5 hours long. And we need to be sure she can handle it.

Ceci’s been continuing to recieve cheer mail here at the hospital and back home and we both want to say Thank You 💜💜💜

It’s cheered her up so much through these tough times. We started taking down the cards off her hospital room walls and are using photo albums to preserve them for her to have and read when she needs some cheering up.

You guys are so awesome!

We just started filling up a 100 page photo album and I think by tomorrow we’ll have to move to the second book.

That’s over 100 cheer cards and notes. So much love 🥰

Well guys we’re getting ready to watch some Netflix shows together and then Dumbo.

I haven’t seen the new Dumbo yet and honestly I’m excited to have the time to watch it from start to end.

We hope everyone’s having a wonderful weekend.

Be back real soon.

Lots of Love, hugs and appreciation,

Alexis (mom), Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

Click the link below to share our GoFundMe- Caring for Courageous Cecilia Marie- and help while I continue to be off on unpaid leave:

www.gofundme.com/supporting-super-ceci

For family and friends asking for a way to help-

Click the link below to sign up to help our family with a family Dinner while Ceci is in the hospital and during her recovery:

https://mealtrain.com/0y3kl5

A home cooked meal would be very appreciated as well as frozen pop in the oven meals or dump bag meals 💜

Prayers please

Ceci could use some extra prayers today please.

She’s not having the best day.

I talked to her dad a bit ago and she’s had a bad headache on and off today, has developed a persistent cough, her Foley catheter got clogged up again due to this UTI she’s fighting- so they had to change it out and the most concerning her heart rate is up in the 150’s again while resting in bed.

The doctors are starting to perform a work up on her to figure out what’s going on.

Dad said they are ordering another EKG and are consulting with neurosurgery.

The last time her heart rate was up in the 150’s she was dehydrated and needed 2 Bolus’s of IV fluids to bring it back down.

But at that time she didn’t have a headache, cough or UTI. So im worried that something’s not right again 😞

She’s been doing so well, besides the pain from the surgical sites- from Tuesdays procedure. But with the new stuff going on they decided to keep her in bed again today.

They planned on getting her up in her wheelchair tomorrow when I go back to the hospital, but we need to figure out what’s going on with sis before we have her fighting to get back in her chair.

When I hear more from dad and sis I’ll update you all.

Thank you friends 🙏

Lots of love, hugs and appreciation,

Alexis (mom), Cecilia Marie and Our Special Family 💜

~Spina Bifida Fighters and Survivor ~

Meal Train- click below:::
https://mealtrain.com/0y3kl5

#TeamCeciStrong

#Prayers

#FaithOverFear