Good Evening Friends

Good evening dear friends and thank you for coming back to check up on our girl 😊

Ceci had a much better afternoon and evening today.

She’s happy, smiling and being silly with me and her little brothers like usual.

She even ate a good amount of dinner. A bowl and a half of taco in a bag and is enjoying some chocolate ice cream now while laying in bed getting her iv fluid Bolus and watching Riverdale.

Her vitals are all good tonight and she’s looking like our sweet girl again. Her color looks good and no bags under her eyes.

She had a wonderful weekend with friends and family.

Saturday some of her besties came to the house to hang out and our girl was all smiles 😁

They listened to music, pigged out on pizza and junk food and for those 6.5 hours Ceci was just a normal teenage girl with no talk about medical agendas or conditions.

It was the happiest I’ve seen her in months and we all appreciated it.

I’m very thankful that she has some of the sweetest best friends that have stood by her through the hardest times. I hope they know how special they are to Cec and our family ❀

So Saturday was a ton of fun but then Ceci got another special treat on Sunday evening.

For the first time in 3 months Ceci got out of the house/ hospital and went somewhere.

2 of her besties and their families invited her to help them at a Trunk or Treat event for their church, volunteering to pass out candy to the kiddos and hang out for service and a dance party.

She was so excited about getting out and the girls did a theme costume together. They were The Pink Ladies and they looked great!

Hehehe πŸ₯° she talked about how fun the church was and the even event until she fell asleep.

It was wonderful seeing her so happy again.

Ceci slept peacefully until about 2am this morning.

Then the worries started.

She called me to her room and she was sick.

Vomited several times, complained about awful tummy pain and bladder spasms and was very anxious and uncomfortable.

I ended up giving her some extra strength tylenol and another dose of Pyridium to calm her bladder.

I also had to change out her Foley catheter and place a new kit because her bladder was so clamped down that she wasn’t passing any urine and was swelling up πŸ˜₯

It was awful early morning.

Soon after the rain started up so the thunder wasn’t allowing her to sleep.

Around 4 I tried to go back to sleep for an hour.

I was back up at 530 and when I went to check up on her she had the head of her bed up and she was sleeping sitting up.

I took her ear buds out, shut down her ipad and laid the bed down.

She slept for most of the morning while Grandma was watching her.

When I got home I saw what might have been causing all the pain and discomfort last night. 😫

Ceci’s Foley catheter bag was almost full even after emptying it at 530am again.

And it was full of blood clots. Im pretty sure with how sick she was last night and what I seen this morning that Cec may have passed her kidney stone.

It was a hard early morning but it would be good if it was gone. We go back to Children’s Hospital in a few weeks for another kidney and bladder ultrasound so we’ll be keeping our fingers crossed that it’s gone.

But please don’t worry friends. She’s doing much better this evening and we’re hoping for a restful night tonight.

Well I better get going. It’ll be time to disconnect Ceci’s Mediport soon.

Hope everyone’s having a wonderful evening.

To everyone that bought raffle tickets for the Hawkeye Wristlet filled with $200 worth of giftcards, make sure you stop by her page tomorrow πŸ˜€

We’ll be drawing the winning ticket and of course it’ll be recorded to share.

Be back tomorrow afternoon.

Lots of love and hugs,
Alexis, Ceci and our special Family πŸ’œ

~Spina Bifida Fighters and Survivor ~

TeamCeciStrong

Il

Beautiful Friday

😊 Good Afternoon everyone!

Thank you for coming by to check up on sissy and our family.

Today’s been a good day. I’m so happy to be able to post that.

Ceci slept until around 10:30 this morning and didn’t wake up one time in the middle of the night with pain or any problems!

Hehehe πŸ€ͺ It was so unusual for us that I looked at my clock at 9am and launched out of my bed to check on her, because I was worried that maybe she dropped her phone off the end table in the middle of the night and couldn’t call me.

But nope she was just tired and sleeping soundly.

She even ate a donut this morning and drank an entire chocolate milk bottle. Such a good sign that sis is feeling better. Her eating has been a big problem since this all started back in July.

I got her in and out of the shower, her wounds dressed and everything else needing to be completed with minimal pain and she’s been sitting up in her wheelchair since happy and looking like our Ceci girl again.

The only negative has been her heart rate.

Which is no big deal. It was back in the 125’s this afternoon so I’m running her 1,000 ml fluid Bolus through her mediport now. It’s been going for about 30 minutes and it’s already coming back down 😊

I have a very grateful heart today.

Ceci’s feeling good today which is something to be oh so grateful for after this very long medical journey- but we’re also very grateful for all the amazing and big hearted friends we have πŸ’œ

We are blessed beyond words.

Our wonderful friends at my work place MVRBC, threw another ~Ceci’s Cafe ~
event yesterday- Walking Taco bar and so many people came by to buy lunch in Ceci’s honor and support our family and tell us just how much they love Ceci. And it meant so much ❀❀❀

My coworker and friends put so much hard work into planning it and we’re touched beyond words.

Thank you dearest friends and supporters. Thank you! I’m very proud to work with so many caring and kind people πŸ’œπŸ’œπŸ’œ

Then yesterday evening in the midst of all the craziness that’s been going on between going back and forth to the hospital in Peoria, our sweet friends Ercie and her daughter Riann came by to deliver supper for our family.

They brought a delicious spaghetti dinner from Grinders (1st time we had it and it was so good!!!) and they surprised the kids with ice cream from Whiteys (yum yum) and all the toppings to make sundaes.

It made their day so much and they ate all the ice cream in one night 😁

It helped out so much. Thank you again girls for bringing us dinner!

Tomorrow VNHA will be coming by to change Ceci’s mediport needle and dressing and then Monday we’ll start up all Ceci’s therapy sessions again.

Of course we’ll take it easy and do what’s best for our girl.

But she’s already voicing that she’s ready for this fight back to being as healthy as possible and regaining her strength in her arms, back and stomach that she lost so many years ago from the Scoliosis and Lorodosis.

She’ll have physical therapy 3 times a week and occupational therapy 2-3 times a week as well.

It’s going to be a very busy time for us over the next few months but we’re ready!!!

We love the phrase from Lilo and Stitch because this family takes it to heart and lives by it 😘

O’hana- means family. Family means nobody gets left behind or forgotten.

We’re in this together ❣

Well it’s time to disconnect our girl so I’m going to go.

Hope everyone’s having a wonderful weekend.

Lots of Love and hugs,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~ Spina Bifida Fighters and Survivor ~

P.s.- The Iowa Hawkeye Wristlet and gift card Raffle is being drawn on Monday. So if you still want tickets please let me know.

I’ll be at the Rock Island Hyvee at 1pm tomorrow in the parking lot closest to the gas station with tickets 😁

You can stop by and see me. Tickets are $3 a piece or 2 for $5.

I’ll be there until 1:45. Thank you guys!

Iowa Hawkeye Raffle for Ceci β€

Iowa Hawkeye Wristlet Raffle Filled- with $200.00 of Giftcards to Various Businesses.

Who wants Raffle Tickets?!?!

Raffle tickets are for sale until this Sunday! 😁 we’re home now so I will be at Hyvee in Rock Island this Saturday at 1pm selling tickets.

Please let me know if this doesn’t work. I can meet you elsewhere this week.

Tickets are $3 a piece or 2 for $5
Raffle tickets are for sale until this Sunday! 😁 we’re home now so I will be at Hyvee in Rock Island this Saturday at 1pm selling tickets.

Please let me know if this doesn’t work. I can meet you elsewhere this week.

Tickets are $3 a piece or 2 for $5.

This beautiful Iowa Hawkeye Wristlet is hand made by our sweet friend Sandy Madrigal and it’s filled with $200 worth of Gift Cards to various businesses.

Monday- 10-14 update

Good evening everyone and welcome back to sis’s page.

First and foremost ❀ much appreciation to you all for keeping Ceci and our family in your thoughts and prayers.

Also sharing our need for prayers as we continue to try to get her pain under control.

Today’s been a full work up day with many visits from Ceci’s medical teams and specialists.

They drew more blood lab work and are strategizing what could be going on within our sweet girls body.

So far the tests have revealed 3 problems that sis is dealing with, but they still don’t explain the awful pain on Ceci’s Right side.

  1. Ceci has a kidney stone in her Left Kidney.
  2. Ceci has a Urinary Tract Infection but we’re waiting on final cultures to see how bad.
  3. One of the screws in Ceci’s spine from her scoliosis Fusion- on the Left side bottom is out of place and resting on surrounding tissues.

Then to make things even more confusing Ceci’s back started breaking out in blisters/hives about an hour ago.

She has several running along the spinal incision site and the doctors do not know what caused it.

We haven’t used any lotions or creams on her back, there isn’t a dressing that could cause irritation and she has started any new medications. So the plan is to keep an eye on her for signs of the blisters/ hives spreading.

Orthopedic surgery came to see us shortly ago and let us know about the loose screw. At this time the plan is to leave it alone and keep an eye on her rods on the left side.

It would be too high of a risk to reopen her spine. We don’t want to end up with another 2 month hospital stay ☹

Since it’s the bottom screw on the left side it’s what was helping hold the rods in position. The good news is that the rods on the left side are still aligned.

Praying hard that her spine is beginning to fuse.

Regarding the kidney stone on her left side we are waiting on more tests to come back.

Nephrology ordered more labs today so it depends on what the results show us tomorrow. Then we will figure out a plan of action for removal or observation.

Infectious disease decided not to begin anymore iv antibiotics until we know the class of bacteria that she’s dealing with in her urine. Once classified we’ll know exactly which antibiotics she needs.

I know waiting seems like a crazy idea since she’s in pain but poor Ceci is often filled with antibiotics so her body’s antibiotic resistance is becoming more and more troublesome.

So we wait…..

That’s a big part of being a frequent flyer in the hospital. The waiting!

You feel like you spend most of your life waiting and impatience isn’t a common characteristic for us special needs parents.

Ceci ate a few bites of dinner and just fell asleep.

She’s exhausted and the past 2 hours everyone under the sun has came in to examine her, causing her increased pain.

The nurse gave her a dose of morphine and she’s resting.

Her appetite is still struggling.

She’s only taking bites here and there and her drinking has gotten worse πŸ˜– according to her smart cup she’s only drank 8 ounces all together today. Very far from our daily goal of 50 ounces.

We’ll try again tomorrow.

Something that made our girl smile big today was a sweet gift brought in from Child Life.

A very kind woman- The Pillowcase Fairy πŸ§šβ€β™€οΈ made this special Halloween Pillowcase and brought it to the hospital along with some others to cheer up the kiddos.

Ceci loves it! And the best part was the sweet gesture inside the pillow case 😊 look at the pictures to see what I’m talking about. Really made my day.

The Child Life gals also took some time today to decorate the floor in preparation of one of our families favorite times of the year- Halloween πŸ‘»

That also made her cheer up a bit. It really is the little things that make this sweet gal smile 😊

Well dearest friends I’m going to hop into the shower and try to lay down myself.

Sounds like another busy day tomorrow full of decisions.

Be back soon.

Lots of Love, hugs and appreciation,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~ Spina Bifida Fighters and Survivor ~

TeamCeciStrong

Fundraiser party for Ceci:
https://tessajo.origamiowl.com/shop/party/526165

Also check out the amazing Iowa Hawkeye Wristlet filled with giftcards Raffle. It’s a few posts down and tickets will continue to sell until October 20th. Let us know if you’d like tickets please.

Day 3 Readmission

Good evening everyone and welcome back to sis’s page.

First and foremost ❀ much appreciation to you all for keeping Ceci and our family in your thoughts and prayers.

Also sharing our need for prayers as we continue to try to get her pain under control.

Today’s been a full work up day with many visits from Ceci’s medical teams and specialists.

They drew more blood lab work and are strategizing what could be going on within our sweet girls body.

So far the tests have revealed 3 problems that sis is dealing with, but they still don’t explain the awful pain on Ceci’s Right side.

  1. Ceci has a kidney stone in her Left Kidney.
  2. Ceci has a Urinary Tract Infection but we’re waiting on final cultures to see how bad.
  3. One of the screws in Ceci’s spine from her scoliosis Fusion- on the Left side bottom is out of place and resting on surrounding tissues.

Then to make things even more confusing Ceci’s back started breaking out in blisters/hives about an hour ago.

She has several running along the spinal incision site and the doctors do not know what caused it.

We haven’t used any lotions or creams on her back, there isn’t a dressing that could cause irritation and she has started any new medications. So the plan is to keep an eye on her for signs of the blisters/ hives spreading.

Orthopedic surgery came to see us shortly ago and let us know about the loose screw. At this time the plan is to leave it alone and keep an eye on her rods on the left side.

It would be too high of a risk to reopen her spine. We don’t want to end up with another 2 month hospital stay ☹

Since it’s the bottom screw on the left side it’s what was helping hold the rods in position. The good news is that the rods on the left side are still aligned.

Praying hard that her spine is beginning to fuse.

Regarding the kidney stone on her left side we are waiting on more tests to come back.

Nephrology ordered more labs today so it depends on what the results show us tomorrow. Then we will figure out a plan of action for removal or observation.

Infectious disease decided not to begin anymore iv antibiotics until we know the class of bacteria that she’s dealing with in her urine. Once classified we’ll know exactly which antibiotics she needs.

I know waiting seems like a crazy idea since she’s in pain but poor Ceci is often filled with antibiotics so her body’s antibiotic resistance is becoming more and more troublesome.

So we wait…..

That’s a big part of being a frequent flyer in the hospital. The waiting!

You feel like you spend most of your life waiting and impatience isn’t a common characteristic for us special needs parents.

Ceci ate a few bites of dinner and just fell asleep.

She’s exhausted and the past 2 hours everyone under the sun has came in to examine her, causing her increased pain.

The nurse gave her a dose of morphine and she’s resting.

Her appetite is still struggling.

She’s only taking bites here and there and her drinking has gotten worse πŸ˜– according to her smart cup she’s only drank 8 ounces all together today. Very far from our daily goal of 50 ounces.

We’ll try again tomorrow.

Something that made our girl smile big today was a sweet gift brought in from Child Life.

A very kind woman- The Pillowcase Fairy πŸ§šβ€β™€οΈ made this special Halloween Pillowcase and brought it to the hospital along with some others to cheer up the kiddos.

Ceci loves it! And the best part was the sweet gesture inside the pillow case 😊 look at the pictures to see what I’m talking about. Really made my day.

The Child Life gals also took some time today to decorate the floor in preparation of one of our families favorite times of the year- Halloween πŸ‘»

That also made her cheer up a bit. It really is the little things that make this sweet gal smile 😊

Well dearest friends I’m going to hop into the shower and try to lay down myself.

Sounds like another busy day tomorrow full of decisions.

Be back soon.

Lots of Love, hugs and appreciation,
Alexis (mom), Cecilia Marie and Our Special Family πŸ’œ

~ Spina Bifida Fighters and Survivor ~

Fundraiser party for Ceci:
https://tessajo.origamiowl.com/shop/party/526165

Also check out the amazing Iowa Hawkeye Wristlet filled with giftcards Raffle. It’s a a post down and tickets will continue to sell until October 20th. Let us know if you’d like tickets please.