So much has happened since the set up of this Campaign. Please read the updates posted here or visit Ceci's Prayer Pagewww.facebook.com/prayingforcecilia
As of today it has been 59 days, Ceci is still inpatient at Children's Hospital of Illinois, she has had 6 surgeries during this stay, over 42 days of continuous IV antibiotics for repeated spinal infections, she has had almost every test under the sun performed, she has been poked for labs almost every 2-3 days, Mom has been off from her full time job on unpaid leave and there is still not a discharge plan in sight.
The family lives 1.5 hours from the hospital and are struggling financially due to sweet Ceci fighting to get better.
If you can, please consider making a donation of love to help with travel expenses, meals, medical costs and unexpected financial hardship while mom stays by Ceci's side in the hospital.
Please also share their story <3
This GoFundMe Campaign has been set up to help Ceci and her family as she fights to get back to her normal life after undergoing her 56th Surgical procedure- Major Spinal Fusion and 2 additional unexpected emergency surgeries due to massive infection.
You can read the original posting below, that was posted before the Original Spinal Fusion.
You can also keep up by reading the updates that are posted about her daily struggles and victories <3
We are keeping this campaign running strong until the family are no longer in need of help.
This has been a very hard road for Ceci and her family.
She's still fighting strong in the hospital and it will take months before this sweet girl is healed.
Originally Set Up 3-20-2019- Please the story below.
This is the 56th Major surgery for this brave and sweet 14 year old girl that continues to smile through it all <3 ￼
*****Please read Ceci's intial story below this update*****
Ceci was initially scheduled for this major and life changing surgery to be done back in April of this year. But after contracting a very bad case of Influenza A (for the 2nd time in less than 2 months)- 2 weeks before her spinal fusion surgery was scheduled, she was rushed by an Ambulance from our local ER to Children's hospital of Illinois.
She spent nearly 2 weeks in admission fighting to get better and had many complications. She ended up needing another surgery and her Spinal Fusion was cancelled due to her instability to withstand Anesthesia.
Well we are back on track for Ceci's now- 56th surgery and she will undergo this Major and scary surgery on Tuesday, July 23rd.
Please Pray very hard for our girl, as we once again prepare to have our lives turned upside down.
Follow along as we update her journey at her website: www.supportingsuperceci.blog
Thank you everyone for taking the time to follow along and for visiting our families go fund me campaign and sharing it with everyone.
Love and appreciation, Alexis (mom), Cecilia Marie and our special little family
~Spina Bifida Fighters and Survivor~
Posted back in April 2019-----
Ceci is approaching her 14th Birthday on May 13th, but before this sweet girl gets a chance to celebrate her big day, she will be having her 55th major Surgery.
Ceci is scheduled on April 23rd of this year, to have the biggest surgery that she has ever had. She will be having surgery on her spine and pelvic bone to give our sweet girl relief from her progressive Scoliosis and Lordosis that she has been living with since birth. ￼
Her body can no longer sustain the pressure from her 72-degree spinal curve, and we have no other choice but to have a team of Orthopedic Surgeons try to correct this the best they can. Her curve has progressed to such a dangerous degree that her right hip bone has been pulled up so substantially that it is rubbing the bottom of her right rib cage.
The pain has also progressed to a point that our daughter can no longer get through the day without having to take some form of pain medication. ￼ Just over the last month there has been growing concerns that her left lung will no longer be able to deal with the pressure from the curve and may in turn collapse on itself. There is also concern about Ceci’s heart function if we continue to let this curve progress. It is going to be a long recovery for our sweet girl and our family.
I usually work full time to try to keep up with our family’s daily expenses as well as all our unexpected costs from numerous emergency hospital stays and surgeries but during this time, I will be taking at least a month of unpaid leave to care for Ceci’s medical needs. Once our sweet girl is stable enough for me to return to work, I will still need to take intermittent unpaid leave for a few months to help her recover, take her to follow up appointments and physical therapy.
Ceci will be retraining all her back muscles since she has lived with this curb for so long. ￼
Ceci’s Surgery will take place at Illinois Children’s Hospital in Peoria, which is 1 ½ hours away from our home. As of now it is projected that Ceci will need to stay inpatient for at least 2-3 weeks’ time to allow her to heal and be monitored from such an extensive procedure.
She will be having a Spinal Fusion that will extend from the Thoracic region of her back all the way to her pelvic bone. 2 Specially trained Children’s Orthopedic Surgeons will perform this surgery together since it will be very complex in nature and will last between 6-8 hours long. I will be staying in the hospital with our daughter every step of the way and will need to make trips back and forth as I can (when family comes to stay),to help care for her 2 younger brothers.
Traveling 1 ½ hours each way. Ceci’s daddy travels across the United States for work so this is especially hard on all of us. My younger children will be staying with their grandmother back home. ￼ We are all worried sick about Cec and have prayed so much about this decision to go forward with this surgery in hopes that she will find relief. We have known since she was 5 years old that this would be needed but pushing it off as long as possible, has made it an almost imaginary need and now the reality is, we can no longer push it out of our minds.
She needs this surgery to survive and have the best quality of life that we can give to her. ￼ She's such a sweetheart and deserves to be able to live pain free.
We are coming to this community to ask for help in calming some of the stresses and worries of losing ½ of our monthly income, so that we can focus strictly on making sure our little girl has everything she needs to get through this tough time and heal with support from our family <3
Any donation big or small will truly make a difference and help our family fight through this surgery as strong as Ceci always fights. Thank you very much for taking time to read our campaign and any Shares that you can offer to the community or social networks to help spread her story and get more prayers and good thoughts out in the universe for her would be kindly appreciated <3
Please come back for updates as our family prepares for this big day and as Ceci recovers after surgery.
Lots of love and hugs to you all, Alexis and Cecilia Marie
~Spina Bifida Fighters and Survivor~ ￼ ￼ ￼ ￼
You can read more about Ceci and our family below:
Our Story: Follow our family’s journey as we share our medical and personal adventure with our 14 year-old princess Cecilia Marie- our Spina Bifida fighter and survivor.
Our family includes me- Ceci’s momma (Alexis), Ceci’s dad (Shawn), her 7-year-old brother (Aiden), her 6-year-old brother (Nicholas) and her 21 -year -old brother (Michael).
Ceci is a beautiful bright girl who has battled more in her young life than most, but always has a positive perspective on life and a sparkling smile on her face to back it up.
Ceci’s medical diagnoses include Myelomeningocele L3-L4 (Spina Bifida ), hydrocephalus with VP shunt and Endoscopic third ventricle opening, Arnold Chiari malformation Type II, Scoliosis, Lordosis, paralysis from the knees down and loss of sensation in her lower extremities, neurogenic bladder and bowel, Gerd, Severe Osteoporosis in her lower extremities causing over 25 fractures and breaks and short-term memory loss.
To date our fighter has had 54 surgeries from brain surgeries to hip surgeries and many more.
To follow along on Ceci's Courageous journey please visit our blog at: www.supportingsuperceci.blog
We post here often with updates on her health and our moments of joy as well :-D You can also visit her old Facebook page to read her past battles and the journey she has been on. https://www.facebook.com/prayingforcecilia
UPDATED APRIL 2019: CECI'S SCOLIOSIS SURGERY HAS BEEN POSTPONED.
SHE HAS BEEN TOO ILL TO PROCEED, SO SHE WILL BE RESCHEDULED FOR JUNE OR JULY TO ALLOW HER LUNGS TIME TO HEAL.
PLEASE GO TO THE UPDATES SECTION TO READ MORE ABOUT WHAT THIS SWEET GIRL HAS BEEN GOING THROUGH. THIS IS THE 2ND TIME SHE HAS HAD INLUENZA IN 2 MONTHS AND WE HAVE BEEN INPATIENT AT CHILDREN'S HOSPITAL OF ILLINOIS FIGHTING TO GET HER BETTER.
WE ARE CONTINUING TO PREPARE AND PLAN FOR THE BIG DAY BUT FOR NOW WE NEED TO GET HER WELL ENOUGH TO HAVE THE SURGERY <3