Good Evening Everyone!

Hi everyone πŸ™‚ Hope you are all well ❀ We have been thinking of you all!!!!

Good Night everyone, Mom here πŸ™‚

Boy has time flown!

The last time I had a moment to sit and write to ya’ll was back in July after sis’s last mediport surgery in Peoria.

So happy to say that her new port is functioning wonderfully still and it even gives blood return! Something that we have not had occur for many years before!

It’s so crazy, but something so small as seeing crimson flushing through her internal line, can make our hearts smile! It means that Ceci will not have to endure multiple needle sticks for labs all the time and will be able to sleep without early morning wakes for blood draws. The staff will be able to draw right off her mediport from now on πŸ™‚

This is huge! considering the last time she was inpatient, before her mediport surgery, she was having multiple labs drawn every 2 days. Thankful for this little blessing ❀

I can not believe it has already been 2 months since her last surgery. Crazy but happy to say that she has NOT been inpatient since then either πŸ™‚

Since COVID-19 started all the extra precautions for all of us, and especially our delicate medical angels- we have been trying our best to manage Ceci’s health the best we can from home and avoid ER visits as strongly as possible.

Some illnesses that usually would entail an ER visit, have now become something that Ceci and I try our best to manage at home. And we are very thankful to say that she has one of the best Pediatric physician’s we have ever met and a wonderful home health infusion nurse that would bend over backwards to help Ceci stay healthy.

Ceci has continued to deal with some nasty urinary tract infections and kidney stone monthly, but she has fought it out and made it through each time without medical intervention.

We have woken up many times in the middle of the night with our girl having awful bladder spasms, tummy pain, nausea, vomiting and anxiety but every time she declines to go in. I think this is all a bit scarier for her, especially after how sick she got just from the FLU last year.

I am playing triage nurse each and every time, along with mom and do my best to gauge her pain before agreeing we will not go in for help. I am relieved to say that the past 2 months we have been able to keep her home with pain medication, heating pads, extra rounds of iv fluids and antibiotics that her peds doctor calls in as soon as she can.

It’s so crazy. Before Ceci was in the hospital last year for 3 months due to the spinal infections, we did not have issues with kidney stones. Now this girl is producing small ones repeatedly. And we do not know why?!?! She has her next appointment with Nephrology in October, so we are hoping that we can find some more answers soon.

She just recently had an appointment in Iowa City with her new Urologist Dr. Lockwood a few weeks ago and she ordered another ultrasound to see how her kidneys were doing. This time there was only one small one on her left side. So again we will keep an eye on her kidneys and go from there. She has an appointment with Nephrology again in October, so we are hoping for more answers soon.

Now on to some good news πŸ˜€

Ceci’s Spinal Imaging 2020

We recently spoke to Dr. Akeson, Ceci’s amazing Pediatric Orthopedic surgeon about her recent scans and we are still amazed! Her spine is stable and everything remains where it should be πŸ™‚

This is such wonderful news for our little fighter! After the very hard journey of multiple spinal infections, her back incision refusing to close and repeated surgeries, we were all so scared that this entire ordeal would not be successful.

With faith and strength she fought through and here we are- Almost a full year later and her spine is looking great! And what a difference it has made for Ceci.

If you look at this scan from 2018 this is what her spine looked like before her surgery and while they tried to stretch her spine out with manipulation. This is a year before surgery. When they did finally get her in for surgery in 2019, her spine was so curved it was around 70 degrees.

From the recent scan I just posted, you can see the difference tremendously.

She has been given back so much from this surgery. She continues to work on strengthening her body and learning where her new center is by attending Physical and Occupational therapy 3 times a week and she is working hard.

I am so proud of her! She is taking this all in stride even though some days it hurts. She’ll come home sore and tired but never complains. Just looks forward to the next goal they set for her.

Another huge blessing has been this swimming pool that Jordan’s Joy gifted her with πŸ™‚ Her body took to swimming for recovery so nicely and it has helped her joints, muscles and bones. She has not had a fracture from her Osteoporosis at all this year! Huge accomplishment and we know the swimming therapy played a big part with this. The water has been a God send.

It’s been such a blessing for her body and the pain that Ceci was finally able to do this after many years πŸ™‚

Ceci is Standing Again!!!!!

We finally got the all okay from her scans and Therapists and we got the funding to finally fix the darn thing.

And boy does it feel wonderful! Not only in our hearts but for Ceci’s body. This is allowing her to get something she rarely gets. A good stretching and the chance to be at the same height as so many. She loves it!

We are taking it slow and she can only be upright for 15-20 minutes at a time, but we are so happy that our girl is back to doing what she loves. And with time she will be doing more and more.

We can not say thank you enough to Michelle and the wonderful, big hearted staff over at Jordan’s Joy. Without her pool to do her therapy in weekly, there’s no way we could have got back here so quickly. Her pool means so much to us ❀ ❀ ❀

Okay everyone I have so many darn things to share with ya’ll but I will wrap it up for tonight.

Okay one more great announcement before I sign out πŸ™‚

So guess who worked her butt off this summer practicing and had the courage to go out for High School Cheerleading?!?!

Anyone? Anyone? LOL……

Our girl did!!!!! And was made the Team!

Ceci made the High School Football team for Rocky and we are so proud!

Of course the season has been affected by COVID-19 as you can guess. But that is not stopping her. She is practicing weekly and is ready for the season to start in spring.

Ya’ll have to come out when things get safe again and help me cheer her on for a game. hehehe πŸ™‚ Have to remind our High Schooler that TeamCeciStrong is still here and cheering her on ❀

Okay ya’ll I’m really signing off now.

We hope everyone is doing well and staying safe. We’ve missed talking to ya’ll.

Be back soon with details about Ceci’s upcoming surgical schedule and to share more good news and pictures.

Lots of Love and Hugs,

Alexis, Cecilia Marie and Our Special Family Too ❀

~ Spina Bifida Fighters and Survivor~



Ready to Go

We’re packed up and ready to go home!

Ceci slept the day away yesterday and is feeling much better today.

We’re waiting on our discharge paperwork and then we are loaded the van and hitting the interstate 😊

Prayers please for safe travels and that Ceci’s incisions heal nicely.

We have to watch her back incision to make sure she doesn’t start leaking cerebral spinal fluid again. Fingers crossed tightly that this won’t happen!

We’ll be back soon.

Have a beautiful Saturday everyone πŸ₯°

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

~Spina Bifida Fighters and Survivor ~


Out of Surgery

Our girls out of surgery but she’s struggling with pain, nausea and a pressure headache.

We’re not going home tonight.

The Pediatric surgeon had to place the new port on the other side of her chest, so making the pocket between her skin and muscle wall has caused allot of soreness and pain.

She has 3 incision sites.

One on each side of chest and one on her back.

Usually our girl is up and moving around with her crazy fighter self, but this has our mighty gal wore out and very sore. She’s barely been awake.

Ceci doesn’t want anything strong so they are giving her ibuprofen and we are using ice to calm the areas.

Hoping after some sleep tonight and more fluid pumping through her body sis will be feeling much better tomorrow.

I’ll keep you all updated if anything changes.

Thank you for keeping her in your prayers dearest friends πŸ’—πŸ’—πŸ’—

This was all unexpected. But she’s fighting strong as always.

Be back soon.

Lots of love, hugs and appreciation,

Alexis, Cecilia Marie and Our Special Family πŸ’œ



Surgeries # 62 and #63

Hey guys

Ceci is waiting to head to pre-op holding.

After much discussion yesterday between Pediatric surgery and Neurosurgery it’s been decided that it would be best for Ceci to have two different surgeries today.

Her port tubing is displaced so Dr. Robertson and IR will go into together to remove her port and be sure to get all the tubing from her chest cavity.

Then they will work to place a new power port in her chest.

Once they are done Dr. Linn will go in and open Ceci’s side to remove the Lumbar shunt that was placed back in October when she had the massive spinal infections.

There’s big concern that with her having a reprogrammable VP shunt in her head and an LP shunt in her spine that her body is draining too much fluids off her brain and spine and that may be what’s causing Ceci to be so dehydrated and why we haven’t been able to wean her off the need of needing port line fluids everyday.

Ceci’s bp has been high the past 2 days, which is new and concerning. So they ordered a cmp, cbc and of course her cross and match and coag for surgery.

Happy to say everything is in normal range.

We’re hoping after surgery and when she’s getting her normal amount of iv fluids again that her BP will come down. High BP is not normal for her.

Please pray for God to guide the surgeons hands and that Ceci’s pain can be controlled after both procedures.

Peds surgery is concerned that removing the port is going to be tricky because she’s had it for 3 years, it’s moved a great amount and it looks like it may be fused to her chest wall πŸ˜”

Ceci’s determined to sleep in her own bed tonight after surgery but we’ll have to see how mommas is doing afterwards.

Be back soon with another update.

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



Back Again

Well this isn’t the good news we wanted to post πŸ˜ͺπŸ₯΄πŸ˜•

We are waiting to get a room on the children’s Floor here at Children’s Hospital of Illinois.

Just had an appointment with Pediatric Surgery and Ceci’s Power Port needs to be replaced.

Her port stopped working on Tuesday and she needs hydration. So she’s getting admitted today and surgery tomorrow.

Prayers that crisis is able to get a deep peripheral line started on our girl and are able to get her fluids.

Update later when we get to a room and have a plan.

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

~Spina Bifida Fighters and Survivor~


It’s June Already!?!?

Thank you so much Nana Roberta for my beautiful and special birthday gifts ❀

Good evening everyone and thank you for coming by tonight.

We hope that everyone is staying healthy and happy.
Our family member (my dad-Ceci and the boys papa) that was battling COVID is doing much better thank goodness and looks to have beaten the virus.

We are very glad to be able to say that and thank you all again for sending our family prayers and good thoughts during that difficult time. We were so worried.

We hope none of our family here is battling the same or has a member battling. It is for sure a scary time.

Please comment and let us know ya’ll are alright. Again, we do not have active personal Facebook pages, so this is our only means of communication with all you wonderful people 😊

I want to say thank you for leaving Ceci so many encouraging and uplifting messages the Thursday we went to Iowa City for all her testing. It was a long hard day of testing, but our girl did amazingly as always. She was a heck of a trooper and did not whisper one complaint.

We did not end of getting out of her last test till nearly 5:30pm and back on the road until about 6pm. We were exhausted! And boy did we sleep well that night.

We got the call on Friday and found out the results we have been waiting for, for months now.

It was not all good news, but we got one BIG piece of good news that made us all smile 😊

Ceci’s Bladder is not going to require a massive Bladder Augmentation Surgery that most of the surgeons believed she needed soon!!!
Thank you, Jesus!!!

We smiled so big here πŸ˜€ and we have been smiling since.

Thank you so much Auntie Kathleen and to my family for this special birthday card and gift ❀

Our girl really needed that win! She has been through so much in the past few years. This type of surgery would have kept Ceci in the hospital for a long time and would have been very risky for sis. We needed some good news in this all.

I had to give you guys the good news before anything else. I had to give you a smile, because I know you take it to the heart for sis just like us.

After all the testing they did on sis last week we found out a lot of important information about her urological and gastrointestinal needs to ensure she will be as healthy as possible and to protect her kidneys from future damage.

She will need another surgery to work on multiple sites at once. It will be a big surgery with multiple surgeons working on her, but less invasive than if they also needed to do the bladder augmentation.

We have discussed the urgency of these big surgeries that will take place on her bladder and bowel and for now we have some time to push it out. After the last 2 years of heartache and pain for Ceci health wise, we want her to have a great summer with our family at home 😊

So as of now we are looking at scheduling her surgery up in our new 2nd home away from home, University of Iowa Stead Family Children’s Hospital in Iowa City in October of this year. She has a 2 week fall break so we will schedule appropriately at that time, so she hopefully will not have to miss school days. After being home tutored for the past 2 years she is very anxious to be back in a school setting with her friends and is ready to start high school in the fall with her peers.

Thank you so much Nana Juanita and to my special friend miss Shayne for sending me these sweet Birthday cards and gifts ❀

It is still sooo crazy to me that our girl is going to be a freshman in the fall! How did this happen!!!

Next May we will be throwing a big sweet 16 party for her, since we were unable to have a Quinceanera this May, which was hard for us but with Ceci’s health and the pandemic it just was not an option.

I need to get the planning going again. There’s only 339 days until the Saturday we would like to celebrate- May 15, 2021.

Things were put on hold once the pandemic hit. I need to find a big hall at an affordable rate for our sweet girl that will be big enough for her to wheel around in her chair and that is accessible for her all friends that also use chairs 😊

She has picked the Theme of- Under the Sea 😊 And she has been filling up her Pinterest with so many ideas! I feel like I am planning a wedding for our girl, but it will be a super special day for her. I need to find someone to make a big beautiful cake, someone to decorate a hall, a gorgeous dress either in mint or coral and so much more!!!

I would love some suggestions if anyone has any ideas! I love coming to ya’ll with help. Some of the best ideas have came from ya’ll πŸ˜€

We are so happy that Ceci will not need a major augmentation surgery in October, but she is dealing with some other issues that have been causing our girl some pain and discomfort.

For the past few weeks sis has been passing kidney stones 😦

In one week she passed 4 kidney stones her at home like a champion and at her appointment in Iowa city a few weeks ago we found out that sis is still dealing with another.

She currently has an 8mm stone in her left kidney.

I still can not believe how strong this girl is! Every time she passed one she would come and report it to me so I could document the size and of course she passed blood too. But then she would just whirl off in her wheelchair, ask for some Tylenol and then go back to making bracelets or painting.

After passing stones of these sizes- all bigger than 6 mm’s- i would have been in the bathroom on the floor. Not our girl! Gosh her strength ❀

So for now we are waiting to see if she will pass this additional stone. If she does not by the time we go back to Iowa City in a few weeks for additional urological testing, they are planning on taking her into the Operating Room to remove the stone and try to prevent any complications.

We could use prayer on this. Prayers that it passes without too much pain and does not cause any complications or infections for sis.

Well dear friends another update to come soon, but it is getting late and I need to finalize Ceci’s infusion for the night and get her to sleep.

Thank you for taking the time to read about our girl and our family.

We’ll be back very soon πŸ™‚

We have a special post coming soon. A few special posts that we can’t wait to share with you all!

Lots of love, hugs and support,

Alexis, Cecilia Marie and Our Special Family ❀

~Spina Bifida Fighters and Survivor~