Merry Time of the Year

Good afternoon dearest friends and welcome back to Ceci’s update page 😁

Only 3 days until Christmas!!!

Hehehe 😁😊πŸ₯° Ceci, Aiden and Nicholas James are very excited about this and make sure we all know the Christmas countdown every morning.

I just love little things like this!

The special moments that bring them excitement and smiles. They are growing up so fast and I know one day Christmas won’t be as special. But for now it’s everything in our special household 😊

The kids are looking forward to the next week.

Monday night we are going to order Pizza Hut for dinner (thank you Nana for the giftcard❀) and watch Christmas Movies together.

Tuesday night hopefully we’ll be able to attend a Christmas Eve Service in the evening, relax in pj’s when we get home and honor our Christmas eve tradition of letting the kids open 1 Christmas gift and make cookies for Santa.

Wednesday I’m off work 😊 so we’re having our older kiddos and grandkids over to have Christmas dinner together, decorate more Christmas cookies and watch the kids open gifts.

We’re happy that this time brings loads of family time and making memories.

Ceci and her 2 younger brothers- Aiden and Nicholas are off of school for 2 weeks so this is rest and relaxing time for them.

And my goodness has the weather been so out of sorts.

Today in Illinois it was 54 degrees. 54 degrees!!! Usually we’re covered in snow and ice by now and bundling up every part of the body.

But today the kids got into sweatshirts and went outside to enjoy the sunshine and play in the backyard. Even our girl got out to enjoy it 😊

And what we’re hearing is that the next 2 days are going to be around the same temps. Nice but sooo crazy.

I’m very happy to report- ceci’s doing good today!

No headaches this evening and her energy level has her keeping up with our crazy boys.

She’s even completed her Beads of Courage project she’s been working on.

She was running out of room to hang her very long strands of Beads of Courage- so we got her a very tall and wide shadow box to place them in.

And it looks great!

She loves the program so much and is a proud member.

Our local hospital doesn’t support the program but Ceci was very lucky to be enrolled in the long distance program many years ago. So she fills out a monthly diary and I place her order online and they send them to sis to honor her Courage and strength.

To learn more about the programs they offer check it out here-
http://www.beadsofcourage.org

Everyone’s been asking how our families honestly doing and although I’m not able to post as much as I’d like to- please know that we’re hanging in here and are doing okay 😊

We’re still fighting to get back to our regular lives again, but for now we’re just all happy and contempt with having Ceci at home and our family together ❀

We still believe that 2020 is our year and things are going to be much better!

Ceci has some medical battles already being discussed for early next year, but we’re trying to just focus on keeping her healthy and home through the flu and pneumonia season.

Influenza has hit our family very hard the past 2 years and left our sweet girl in the hospital for extended stays.

So any signs of our family members coming down with such symptoms is going to have us all on caution mode and of course me disinfecting like crazy.

We love having visitors here at home but I have to ask now- if your running a fever, feeling ill or have been exposed to something contagious please try to visit another time.

I’m saddened to say that our outings have greatly decreased for our family and our home sleepovers because of our need to protect Ceci until she gets stronger, but please don’t think it has anything to do with anyone personally.

We’re still here and we still love you all! 😁

We’ve just been a little occupied since Ceci came home a few months ago and our lives were turned upside down by major health status changes.

Cec has many appointments coming up after December and her team’s will start setting up some meetings to discuss her ongoing care.

But 2020 is going to get better!!!

Well dearest friends I have to get going for now, but we’ll be back real soon with another update.

Be back real soon.

Lots of love, hugs and appreciation to all our Courage Crew Members,

Alexis, Cecilia Marie and Our Special family πŸ’œ

~Spina Bifida Fighters and Survivor~

https://www.gofundme.com/teamcecistrong

TeamCeciStrong

Good evening dearest friends

Good evening everyone and welcome back!

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

We hope everyone from our neck of the woods and anyone else in winter weather areas are staying dry and warm.

Here in Illinois we had some wind accompanied by rain then some snow that thankfully didn’t last long. But boy was it cold today!

I picked up the boys from each of their schools and standing outside for 15 minutes had me dreaming about sitting next to a warm fire place with a cup of coffee in my hands. I’m a huge coffee lover πŸ˜„ otherwise I would have said a cup of hot cocoa.

Our girl is doing good today ( knocking hard on her wooden slide board). She had her home tutoring session with the lovely miss Jackie this morning and did wonderful without a headache complaint.

Jackie I have to tell you thank you !

I can tell she’s really enjoying your sessions together. She really misses being at school with the other kids but your visits are something she looks forward to.

She even showed me some math that your working on. For Ceci that’s HUGE since math has long been a struggle for her.

So thank you for helping her feel better about it. πŸ’œ

Ceci is continuing to be home schooled for now because she is still recovering and her body needs time to heal.

Between the long hospital stays and the ongoing infections and pain she hasn’t gone to school at all this entire school year πŸ˜”

Some days Aiden and Nicky get a little rowdy and loud, like 7 and 8 year old boys do and it can cause our girl to seek out her room.

Loud noises have been causing some increased headaches along with the weather changes.

Her doctors,me and her dad have decided that it would be best to discuss our girl starting school in early spring to give her body more time and also in hopes that Cec won’t catch any of the flu or pneumonia bugs that have been going around.

In early spring we’ll start with half days and then progress her into going back fulltime as she can tolerate the hours.

This is her 8th grade year. She’s bummed that she can’t be with her friend’s and peers but she does also understand how important it is to heal.

She’ll be starting high school next year so we’ll want her as strong as possible for her next big life journey.

High school….. I can’t even believe I’m typing those words out!

Where did all these years go?!?!

So many of you remember our little girl when she was a tiny little pumpkin scooting all over the house with her big beautiful smile.

Painting, singing, playing dress up and all while I posted on a site called Carepages to keep everyone updated on her battle and to bring awareness to all our Spina Bifida warriors ❀

Now she’s 14 and we’re thinking about wheelchair accessible cars for her to start driving, high schools and not much longer-colleges.

This sweet 14 year old girl has been through hell and back too many times to count with her health but looking at these photos you’d never guess.

And that’s what I love about her. She holds strong to her faith through the hardest moments and even when she wants to cry she tries reassuring everyone she loves with a smile.

Things have still been very hard for our family financially with myself only working about half the year and taking unpaid leave for the other and sometimes I want to just break down and ask why?! But then I see little miss at home and doing so much better than a few months ago and I know that’s what counts. She’s still smiling and for myself that’s the biggest win πŸ’•

Ceci also had physical therapy today and did wonderfully. She’s gaining use of muscles she hasn’t used in years and we continue to see flexion coming back in her ankles and knees which will help prevent more fractures and breaks in her lower extremities.

She’s working so hard on strength building and never complains that it’s too much. She has her days that she needs an extra dose of extra strength tylenol and the heating pads but since we came home from the hospital in October she’s only cancelled a p.t. appointment once because she had a migraine.

We’re hoping that once we get her side surgically closed and repaired that we’ll be able to get her back in the pool for some swim therapy.

Of course until summer comes back around, we’d have to find a location that specializes in pool therapy. She misses swimming so much! It’s really become one of her favourite things to do.

We’re hoping once our finances get better next year that we’ll eventually be able to get her and the boys a hard sided permanent above ground pool and extend our deck around it for easier transfers of sis 😁

Our family is a huge outdoors kind of family so swimming is a huge enjoyment for us all. It’ll help so much with Ceci’s joint pain, osteoporosis and her back muscles from the scoli surgery. And if our girl can get so much enjoyment and will also get huge benefits from water therapy it’s a win win all around.

I just took another look at the picture of sis sitting on her bed and it still hits me everytime.

I can’t believe how much straighter she sits after her scoli surgery.

It has changed things in so many ways and we’re very happy to say after her long stay and her intense p.t. she’s doing much better with the back and side pain.

Honestly it’s pretty much non existent now.

It has one of the hardest recoveries she’s ever had but the benefits are showing and we’re only 2 months out from her last spinal infection and her last back wound closing up.

I can’t wait to see where our girl will be strength wise in a years time. She dreams about getting back into a manual wheelchair (it’s been years since she’s had the strength) to be able to play wheelchair basketball someday and I believe with how hard she’s pushing herself everyday that she’ll accomplish this by this summer.

God is so good πŸ™ŒπŸ™πŸ™ŒπŸ™

We wanted to send some cheer mail shout outs πŸ’•

Sis’s recieved some very sweet Christmas packages in the mail today from our sweet Facebook family members miss Cristina and Fiona and also miss Roberta.

Thank you so very much ladies for thinking of her 😁 I will wrap up these wonderful gifts and place them under the tree for little miss.

I’ll be sure to post pictures of her opening them on Christmas.

Well dearest friends it’s time to call it a night.

We hope that everyone’s doing wonderfully here and if you celebrate Christmas that your tree is up and your heart is full πŸŽ„

We have the Christmas spirit going full force here with our angels out, lights up, Christmas tree flowering, Christmas music playing and have started our Christmas baking sessions.

Our kids have been in the spirit and we love it!

I know Ceci and the boys would love to see everyone’s Christmas trees/ Christmas decorations. Post a picture in the comments to share 😊

Be back real soon.

Lots of love and hugs,
Alexis, Cecilia Marie and Our Special Family πŸ’œ

~ Spina Bifida Fighters and Survivor ~

TeamCeciStrong

Happy December πŸŽ„

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

Boy have our days been flying by!

We’re still in this out of our “normal” element, but we’re dealing with it all everyday and making the best of the good days we do have 😊

We’re taking one day at a time and are thanking God for the good ones, instead of cursing about the bad ones πŸ€—

We had a splendid Thanksgiving with our family and friends and hope everyone else did as well.

We were grateful that we spent time with many members of our family and our babies even had their great- grandfather from my side of the family and their great- grandmother from dad’s side of the family present for the celebration.

With how crazy busy our lives get these days I’m sad to say we don’t get to spend as much time with them as we hope too.

And that’s the same with our dearest friends.

This past year has changed so much for us with our sweet girls health struggling. I know we aren’t able to talk and hang out with family and friends much anymore, including posting here as frequently as we want to, but don’t ever think that you guys mean any less to us.

These days our family seems to find ourselves a bit more tired than in past days.

Between both me and dad working as much as we can, taking odd jobs to try to make a little more to help provide for Ceci’s medical needs and our families, doctors appointments, therapies, trips to the pharmacy and then just your everyday stuff we’ve all been so exhausted 😴😴😴

Lol, it’s been so exhausting lately that dad actually checked the house for a gas leak because we’ve all been so out of it.

Thankfully there wasn’t one, but it made me come to a realization that our families beat and we all need a break!

So with next year sneaking around the corner I’ve decided that we’re going to start up a Vacation Coin Jar and everytime we have change it’s going in.

I know it seems like a crazy feat but you don’t realize how much change adds up until you start collecting it. We’ve never had a family vacation in all these years and maybe by Christmas of 2020 I can make Ceci’s dream come true of visiting Mexico and the boys dream of flying in a plane.

πŸ˜‰ What was it that Walt Disney said:

“All our dreams can come true, if we have the courage to pursue them”.

We’ll make it happen! I know we can.

I hope that everyone here’s been doing well health wise.

Thankfully our family hasn’t been hit with any major flu stuff yet. Fingers crossed we won’t hit that yearly mess this winter and it doesn’t take our family down.

Our kiddos are so close that usually 1 catches something and then within days the other 2 kidddos have it too.

I love the family love just not when it comes to illnesses 😷

Ceci has been having an off week since Sunday.

Poor girls been dealing with some pretty bad headaches that resemble migraines ( sensitivity to light, noise and some dizziness) and has been tired and just worn down.

I know she’s grateful that tomorrow’s Friday- because I’m off on Fridays. So she’ll be able to sleep in as long as she wants to while the boys are at school and rest in bed.

She’s been needing our IV fluids earlier in the day time this week and extra doses of pain medication.

I’m hoping it’s just the weather. When we have changes in the weather patterns and pressures our strong little Chiari and Hydrocephalus warrior tends to feel it hard.

Anyone with Chiari, hydrocephalus or shunts experience the same? We’d love to read your comments about it. Let us know if this affects you and if there’s anything that helps the pain.

On top of these headaches Ceci’s been dealing with some other things.

Last night after her infusion we dressed her in a pair of the comfy jammies that one of our sweet friends here sent her, and I could tell by her facial expression something was wrong.

She asked if I could please take a look at her back and of course I felt immediate dread.

As most of you recall this was the same request Cec had when her back split open and we were dealing with all those dreaded infections that had her in the hospital for 2 months.

So I turned on the bright room lamp that we keep next to her bed for medical procedures and had her lay forward across a pillow.

The first thing I noticed was that Ceci’s shoulders and back were covered in tiny spots. Yep our poor girl has a rash covering her back.

Then I noticed what else was bothering her. Ceci has a skin tear on the bottom left side of her back that’s about 3 inch wide and painful for our girl πŸ˜₯

Immediately I thought about that loose screw that we know about on the bottom left side of her back.

Is it pushing through her skin?

Is her body rejecting it?

Is there another active infection???

All this has been racing through my head since yesterday. Very hard to sleep when your in mommy- nurse mode.

I cleaned it up, placed triple antibacterial ointment on it and covered it with a foam dressing.

Today was the day that Ceci’s wonderful nurse case manager was coming by to do her weekly port needle change to her chest, so Ceci showed her what’s been going on.

She’s hoping the rash is just a heat rash from the crazy weather and maybe getting too hot when she’s sleeping, but she too thought about that darn screw when I showed her the wound.

So we’ll be keeping a very close eye on her back and our girl over the weekend.

This weekend we don’t have much planned so it’s going to be a relaxing weekend at home.

We had planned on putting the Christmas tree up this weekend and making Christmas trail mix and cookies but somehow the kids convinced me we should put it up yesterday while we watched the new Grinch movie and listened to Christmas music πŸ₯° I can’t tell these sweet kiddos no even when I’m too tired to clean LOL.



I must admit it has brought such joy to our home.

We all enjoy Christmas lights so much. Shoot when the kids were younger and our financial situation was a bit better I use to cover our house outside with beautiful lights and decorations. It was always a huge task that took me hours, but seeing the huge smiles on the kids faces made it worth it.

😊 next year! I’m hoping I can do it again. For not only the kids but our grandbabies too.

This awful year is almost over and next year is going to be great!

I truly believe with all my heart that 2020 is going to be our families year.

Hehehe Ceci says anything has to be better than this year and I agree.

Well dearest friends I better get going. It’s homework and jammie time and I’m already looking forward to bedtime myself.

Wishing you all nothing but a wonderful week!

We’ll be back soon.

Lots of love and hugs,
Alexis, Cecilia Marie and Our Special Family πŸ’œ

~Spina Bifida Fighters and Survivor ~

P.s.- πŸ₯° Nana thank you so much for sending our family the very sweet Thanksgiving card.

Really made our day and the kids loved hearing from you.

TeamCeciStrong

HAPPY WEDNESDAY

Good afternoon dearest friends and welcome back to our families page.

Boy do I feel much better than the last time I posted an update.

Last week was rough.

I was fighting a double ear infection, laryngitis and a sinus infection and we made trips back and forth to Children’s Hospital of Illinois both Monday and Thursday for sis’s appointments and testing.

I’m feeling much better this afternoon and wanted to be sure to post about our girl for you all.

Ceci is doing much better today. We received confirmation from her Renal Ultrasound performed on Monday, that she passed her Kidney stone.

Thank you Jesus!!! πŸ™πŸ™πŸ™

It has been causing her so much pain and nausea that her nights were getting harder.

We were up at least 2-3 times a night changing catheters, administering pain medication and dosing with extra pyridum to try to calm her bladder.

There was a few times over the past 2 weeks that I was worried we were going to have to head back to the Emergency room for intervention. So you can understand how grateful we are knowing that it’s passed and at this time they are not finding anymore masses on scan.

Another issue we discussed at her appointment with Neurosurgery was her migraines she’s continuing to have on and off since we came home in October.

Neurosurgery changed her vp shunt setting to 1.5 and we’ve almost completely weaned her off of the Gabapentin. We’re hoping this will help. If not then they’ll add in Topimax to her medication list to see if we can get them under control.

Sis is still on so many medications throughout the day, so we’re trying to cut some of the ones they don’t believe are absolutely necessary but so far we’re hitting some bumps.

We took Ceci completely off the Baclofen 10 mg about 2 week’s ago. But the team decided to restart her back on it last week because her bladder wasn’t cooperating after we discontinued it.

Her body still needs time to heal and recuperate from this past year. It’s been too much. And that’s something me and her team has been going around and around with lately.

Thursday we had a long discussion about yet another series of surgeries Ceci needs.

Her side wound from her cecostomy tube’s balloon ripping through her side back in April from the flu, is still causing Cec alot of pain and problems that we are trying to manage everyday with ostomy supplies and creams. It’s a constant battle and a painful one 😭

Ceci’s pediatric surgeon was hopeful that the wound would close on its own but it hasn’t happened and they don’t believe it will because it’s been over 7 months.

So Ceci needs a big reconstructive surgery on her intestines and right side. It will be another bigger procedure that will include removing her LP shunt, opening her side, moving her intestine away from her abdomen wall, and using a skin flap to close.

While they are operating on her abdomen they want to also perform a bladder augmentation on Ceci’s bladder and also do an operation to place a Supapubic catheter into her bladder, to try to lessen her infections and pain.

Which brings us to what else we found out last week.

Ceci has been fighting another awful pseudomonas infection in her bladder 😞 she’s had it for over 2 weeks and because Illinois Medicaid fought us- regarding approval for her antibiotic. She’s had it longer than necessary.

At first they only approved half of the 10 day dosages but we found out today, that her wonderful peds office got the second half approved today. So I’m hoping that by early next week sis will be feeling much better.

The last few days she’s had traces of blood in her Foley bag and I’m sure it’s because of the length of this infection.

The surgeons had brought up bringing Ceci into the hospital again in December for this next big abdominal surgery, but I refused.

She’s missed so many birthdays and Holidays and I don’t want to bring her in during the Christmas season and separate our family again during such a special time.

Ceci, our boys and our family need more time to recover from being separated so long and worrying about our girl. Honestly we need a never taken Family Vacation to get away from everything!

Doctor appointments, all her therapies, labs, tests and hospital stays.

This year has been too much and it’s still not over ☹

We have faith that next year will be better. πŸ’œ It has to be 😊

For now we’ve put Ceci’s 63rd surgery on the back burner and will revisit the need again in the springtime. We know she needs it done but I truly believe her body needs more rest.

There was very real concern that Ceci may not make it through the last hospitalization and it broke us down in many ways.

Putting that in words really hits hard. It was a very scary year. We’re just very grateful that she’s doing much better than even a month ago.

Thank you Jesus!!! πŸ™πŸ™πŸ™

We’re looking forward to next week like so many are.

Me and dad are both off work Thursday and Friday and the boys are out of school Wednesday- Friday. So we’re looking forward to a long relaxing weekend with our family 😊

Thankfully some very kind Thanksgiving angels blessed us so we will have a wonderful Thanksgiving Dinner on Thursday and we have family coming to celebrate with us too.

We continue to live our lives day to day and for now that’s what’s best for our family and our girl.

We’re thankful and grateful for the good days and fight to get through every bad day with the same passion.

Well it’s time for me to sign off for now.

We have medical procedures to get done and I promised the kiddos that we’d watch a movie off of the Disney + app before homework and bedtime 😁

We hope everyone’s doing well.

I’ll be back soon with another update.

Lots of Love and Hugs,
Alexis, Cecilia Marie and Our Special Family πŸ’œ

~ Spina Bifida Fighters and Survivor~

TeamCeciStrong

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.