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-

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~


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 ~


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.