Home Tutoring for Ceci

Good morning everyone, mom here.

Quick update on sis.

She’s having a good morning πŸ™‚

We had to complete a full wound dressing change including the ostomy bag earlier but she did very well.

She even ate breakfast which rarely happens. She’s not a morning eater but she ate some sausage patties and a little of a pancake before you declared she didn’t want anymore.

She’s getting stir crazy which I totally understand. I told her if I’m able to walk after my chiropractor appointment we might be able to get outside for a little bit πŸ™‚

We worked with ceci’s school and her pediatric surgery team today to get ceci set up with home tutoring.

She’s still not able to return to school at this time, so starting Monday the school district is sending a teacher to our home to work on assignments with her. Ceci is very excited about this.

Mentally she’s ready to go go go, but physically her body’s not there yet. So having something to focus on here at home will help tremendously 😁

Well I have to run for now.

Wishing you all a beautiful Thursday!

Be back soon.

Lots of love and hugs,

Alexis, Cecilia Marie and family

~ Spina bifida Fighters and Survivor~


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 πŸ˜–

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. πŸ™„ 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 πŸ’œAs 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 ~


Happy Tuesday Friends

Good morning dear friends and happy Tuesday.Thank you for checking back in with Ceci and our family ❀

Ceci and I woke up today feeling out of sorts and we both think we know why.

Today was suppose to be the big day….. the big day that we have been waiting for….. the big day that we’ve been dreading…. her 55th surgery…. the surgery to hopefully bring her some relief from the pain….. her scoliosis fusion.

It’s frustrating that after waiting months to get her scheduled we are back to waiting again.

Ceci’s dealing with the side and back pain almost everyday now and the only thing we can do is try to keep her as comfortable as possible until the day comes.

As of now her Scoliosis Fusion has been moved to Tuesday, July 23rd.

It seems so far away right now, but we know it’ll be here before we know it. We’re frustrated but I just keep reminding myself that this will give her a summer break that she really needs at this point and this will give us some more time to prepare.

Realistically Ceci’s body is not strong enough to go through something as big as this surgery right now.

Weeks ago when they took her into the operating room to explore her wound, she was only under anesthesia for an hour and a half and her body could not handle it.

They had a hard time waking her up, she couldn’t stop coughing (she wasn’t even intubated) and they ended up having to put her on oxygen.

This was the very first time she’s ever had an issue with anesthesia even after being put under more than 100 times for surgeries and testings. So this was very scary for her medical team and for us.

So you can see a 6-8 hour surgery where she’ll be put under anesthesia deeply and will be intubated is definitely not an option right now.

So we will be patient and wait until God says its time.

After this 2nd bought of influenza that left Ceci very ill and caused her tube to punch through her abdomen wall, she’s continuing to recover her at home.

Mentally she feels up to going back to school and being back with her friends but physically her body is still fighting her.

Yesterday was one of the hardest days we have had since coming home from Children’s Hospital.Ceci was in a very high level of pain, was shaking, vomiting repeatedly, crying and experiencing severe light sensitivity.

My heart was breaking to see her in so much pain again.

I ended up helping her into the shower to see if that would help, but it didn’t.So we got her into some comfortable clothing and wrapped her up in warm blankets.

After another dose of pain medication and rubbing her head and neck for 15 minutes she finally fell asleep.

She slept for almost 2 hours and when she did wake it was like nothing ever happened. I was very thankful for the relief from the pain for her but of course was concerned it would come back.

Thankfully the remainder of the evening was quiet.

Before we had this awful experience yesterday I was hopeful I could have Ceci’s grandmother stay with ceci this week so that I could try to get back to work.But yesterday proved that she needs more time to heal and she needs more time with me by her side.

So I will not be able to return to work this week.

I usually work full time but when ceci needs me, I’m right by her side through it all. I haven’t been able to work since the beginning of April and most likely won’t be back until May.

With this being a very trying time financially for us, I want to send tremendous gratitude and appreciation to everyone once again that has helped support our family and has helped us keep our heads above the water while we fight to get Ceci well again.

The love and support will never be forgotten. Thank you so much ❀❀❀

Well I need to sign off for now.

In the midst of all this craziness we’ve been doing some remodeling in Ceci’s bedroom due to her tiles cracking and it being unsafe to walk on.

Well we found bad news once we started lifting up the tiles.

We found water damage coming from her double bedroom doors that has caused extensive floor damage 😭

It has eaten through the tiles (what caused them to crack), through the underlayment flooring and through the floor foundation.

So currently ceci has some holes in her floor that you can see the basement through.

It’s another huge stress that we do not need right now but we need to deal with.

So today and tomorrow I need to see about setting up some estimates with contractors to find out how bad the damage truly is and what kind of cost we are looking at πŸ˜–

Any suggestions would be greatly appreciated.

I’m so lost with all this.

Prayers please for continued healing for ceci and for things to get brighter in our situation.

We are looking forward to some sunshine for sure 😜

We hope everyone is having a much better day.

Lots of love and hugs,

Alexis, Ceci and our Family

~Spina Bifida Fighters and Survivor~


Happy Saturday

Ceci wanted to send a big thank you shout out to Mary Keyser for the sweet Birthday card for sis.

😁 she was happy about getting mail.

Thank you.

Ceci wants to send another big thank you shout out to our friend Shayne ❀

She really enjoys all three travel photos you send to her.

The sleeping polar bear is so cute!

Thank you for sharing your beautiful pictures with us.

Ceci and our family want to send another huge thank you out to all the sweet staff at Ceci’s old Elementary school- Rock Island Center for Math and Science.

You guys really made her day with the card and notes ❀

It made her feel so special and the kind donations are helping our family have a nice Easter dinner.

We can’t thank you all enough for your kindness 😁

One last big thank you for today 😁

Ceci received another sweet package in the mail from a book store online and she wanted me to say thank you to the sweet soul that sent her this book.

She can’t wait to start reading it. She said it looks so good.

Thank you ❀ dear angel.

Ceci is doing good today 😁

She’s getting her color back day by day and no fever! She even got out of the house for a bit, which made her so happy.

Her Auntie helped host a community Easter event this morning so we went and the kids had so much fun.

The boys participated in an egg hunt and Ceci helped put eggs on the field for the kiddos. She really enjoyed helping out with the younger kids.

It was what her spirit needed. It was a great morning.

We are back relaxing at the house. We have family coming for dinner and are looking forward to just getting the chance to rest and be with family.

It’s so beautiful outside today. We’re her in Illinois and it’s nearly 80.

The kids are sitting on the patio playing checkers.

Well I better work on getting dinner finished up.

We hope everyone’s having a beautiful Easter Weekend.

Thank you for continuing to pray for Ceci to heal.

We’ll be back soon.

Lots of love and hugs,

Alexis, Cecilia Marie and our family

~Spina Bifida Fighters and Survivor ~

β€πŸ’œβ€πŸ’œ we want to send another thank you to everyone that has donated to our GoFundMe account. Because of the generosity that has been shown to us, we have been able to keep our heads above the water during this very difficult time.Thank you so much β€πŸ’œβ€πŸ’œ

No Way! Fever go Away

Good night πŸŒ•dear friends on this side of the world and Good morning β˜€οΈ to our dear friends on the other side. Thank you for stopping back by.

Well I wish I could say it’s been a great day for Cecilia, but I’m afraid we’re just not there yet.

I had to call pediatric surgery to discuss some GI issues she’s dealing with and unfortunately it could cause us another trip back to Children’s if we can’t get it controlled soon.

We were given some tips and tricks to try today but it didn’t work so we’ll be back at it tomorrow.

I do not want to get in to, too much detail about what it is, but I will say she has not has a bowel movement since Monday.

With Ceci’s history of neurogenic bowel this is not good. It could cause an obstruction.

We’ll have to see how tomorrow goes but if her intestines don’t get working again soon, it may be another hospital stay πŸ˜“

My concern for Ceci is elevated this evening because she’s running a fever on top of this other stuff. 100.9

She hasn’t had a fever in over a week. *sigh*…… please don’t let another viral illness knock her down Lord.

I got her into bed shortly ago and I could tell in her face that she wasn’t feeling well but didn’t want to say anything.

So she changed into pajamas and I did her wound care. All though it was not easy this time. Her site is leaking alot, which is causing burning again.

I cleaned it up the best I could, used some barrier swabs around the opening to protect her skin and then used another colostomy bagging system to catch the seepage until we can get this under control and Ceci’s side heals.

Poor girl. πŸ˜–

She wants to get back to school and being with her friends so badly, but with the way things are right now I’m not sure when she’ll get to go back to school.

While she was in the hospital her wonderful school teacher miss Lauren was working with her each day. It was school work but it took her mind off what was going on around her. And I believe it gave her a sense of normalcy.

It’s crazy the things that we take for granted and do not appreciate until you do not have ability to do them anymore.

Unlike a lot of other junior high students who would much rather be sleeping in on school days, Ceci appreciates school and misses it.

Well guys I better try to get some rest in case Ceci needs me in the middle of the night.

Her youngest brother Nicholas has been sleeping on her couch each night because he says he doesn’t want to sleep alone 😊 but I really think it’s because he’s worried about her and feels she needs protection from all she’s been going through.

Ceci really has the best brother’s a girl could ask for πŸ’™ I’m so grateful that God blessed her with siblings and ones that love her so much.

We’ll be back soon.

Lots of love and hugs,

Alexis, Cecilia and our Family

~Spina Bifida Fighters and Survivor ~


Thank Yous

Ceci wants to send a huge thank you shout out to my wonderful co-workers and friends at Mississippi Valley Regional Blood center, for the amazing Get Well basket of goodies and the sweet card ❀

She loves everything! It was absolutely perfect and it meant alot to her. Thank you guys πŸ’—

Ceci wants to send another big thank you shout out to our sweet friend miss Roberta Beach for sending her these awesome water proof Uno Cards.

Uno is her favorite game to play to pass the time in the hospital.

Usually our great friends in the Child Life department can track a set down for us to play but the hospital was fresh out. So sis had me going to all the gift shops in the hospital looking for a deck.

She’s so excited about these because they are water proof 😁 Ceci already has plans to play with them in our swimming pool this summer.

Thank you Roberta ❀

Another big shout out to our sweet friend April Crook for sending sis this cute Get Well card ❀

It really makes her day getting mail and your note made her smile.

She loved the quote as well.

Thank you April ❀

Our family has another big thank you shout out to send out.

We want to thank some very dear friends of ours – the Stockdale family πŸ’œ

Ceci’s sweet friend Mary and her momma did some much needed shopping at Costco for us, the evening Ceci got home.

They delivered some home supplies that we needed, since I have not had a chance to shop in weeks.

The haul included disinfecting wipes (we needed badly), disinfecting sprays, laundry soap, toilet paper, paper towels and some yummy goodies for the kids.

Really meant alot since getting out of the house is hard for me to do right now.

Thank you so much dear friends πŸ’œ

We’re Home πŸ’œ

Good night dear friends 😁

We’re so happy to report that we are back home with our family ❀

We came home yesterday evening and it was such a sweet relief to sleep in our own beds for the first time in a long time.

Ceci did okay on the ride home. It’s an hour and a half drive, so this was concerning but thankfully with Ceci’s amazing state of the art wheelchair she was able to recline all the way to a laying down position by herself and rest.

With the help of the pain medication she did just fine.

Once I got her settled into her bed for the evening and she was fast asleep, my work began.

We have a lot of new medical supplies that Ceci will need for awhile so I had to sort everything, take down reorder #’s and find a good spot to store items in her room that is already overflowing with medical supplies πŸ₯΄

This also meant going through and reorganizing daily medications and wiping the heck out of everything here at home with disinfecting wipes and sprays.

It was a long night but things are starting to feel a little bit more back to our normal.

Today Ceci rested most of the day and enjoyed her brothers and dads company when they came home from school and work.

After almost 3 week’s she was finally able to get into a real shower which made her day. No more bed baths πŸ‘³β€β™€οΈ and partial hair washings. So that was wonderful.

We did have to do a complete wound dressing change which was hard. Her site is still raw from the tissues getting ripped up so there was pain- but thankfully no where near a 10. Ceci says it’s more like a 3 or 4.

We will continue monitoring her wound and will follow up with pediatric surgery in the next coming weeks to make sure it will heal on its own.

Prayers please that it does and it does it quicker than we are anticipating.

Ceci needs a health time out for sure!!!

No more trips back into an operating room until her Scoliosis Fusion surgery -please Lord Jesus.

Please give this sweet girl a wonderful summer break and allow her body the time needed to heal and recuperate from all this!

Well dear friends I have some pictures I’d like to share but now that Ceci and the boys are resting soundly in their beds my bodies telling me it’s my turn too.

Have a wonderful evening everyone and we will be back tomorrow with another update on our sweet girl.

Thank you all for your continued support as Ceci fights to continue to heal and get stronger each day πŸ’œ

Lots of love, hugs and appreciation,

Alexis, Ceci and our family

~Spina Bifida Fighters and Survivor ~

Ceci’s Strength


Our friends at News Channel 4 did a wonderful job sharing Ceci’s story today and what lays ahead as we continue to prepare for her 55th surgery and She heals from this entire ordeal.

Click the link above to see the entire story that aired today along with the wonderful article Shawn wrote about Ceci.