Wow today is July 2nd, 2019.
Where did the past few months go???
Ceci, Myself and our family cannot believe that we are in the month of July and to be honest we are not prepared for what this month brings.
Ceci will be heading into surgery at 7am on Tuesday, July 23rd to have her rescheduled Scoliosis Spinal Fusion surgery.
We will need to arrive at Children’s Hospital of Illinois in Peoria at 5am and we will prepare to kiss our strong girl off to surgery only a few short hours later.
The game plan is the same as it was for her initially scheduled surgery back in April before she got so very ill.
Ceci’s surgeons will work together to fuse her spine from the top of her Thoracic Vertebrae all the way down to her pelvic bone.
As you can see above this is almost the entirety of her spine, and with how much of her vertebrae is involved in this big surgery, it is worrisome to us all. But at this point we are left without any other options.
Ceci lives with side and back pain as well as an increase of chest soreness from her ribs being pushed down so far to the point that her hip is rubbing against the bottom her rib cage on one side. She has also been recently dealing with some intense upper leg cramping and spasming which is believed to also be from her scoliosis. Nerves being pressed on and causing sciatic pain.
MVRBC has collected blood from Ceci’s dad and me to prepare for her surgery. Her orthopedic surgeon believes with how extensive her surgery will be, she will need 3-5 units. They are estimating it will be a 4-6-hour long surgery.
This will be one of the longest surgeries that she has ever had and as you can imagine, my momma bird nerves are a mess right now trying to prepare our sweet girl and our family for this.
Ceci will miss the 1st month of her 8th grade school year, since school starts back for our kiddos on August 2nd.
Once we are home and she is feeling up to it, she will resume working with a tutor from home until she is cleared to return to school. She hopes she will be able to return as soon as she can but with how suspectable Ceci has been to sicknesses the past 6 months we will have to wait until her doctors believe she is up to it. She missed the last 2 months of school last year due to illness and complications so having to miss more school has her frowning.
I will of course stay bedside with Ceci in Peoria. I will be taking another month of Unpaid Leave from work, like I did in April to make sure our girl knows she is never alone.
I cannot imagine our girl ever having to do any of this alone. I stay with her fulltime unless her adopted grandma and good friend Miss Cindy comes up to stay the night with Ceci. When she needs a break from me (teenage hormones) I am blessed to have her stay with Ceci and I know she is in great hands.
Cindy came to us many years ago when Ceci still qualified for home health care, as a RN and cared for Ceci for many years. Not only did she help manage her health care needs, allowing me to work without worry but she made such a special friendship with Ceci and our family. Although Ceci lost her home health care privileges from insurance years ago, Cindy has still held a special place with us ❤
Ceci has 2 younger brothers- Aiden age 8 and Nick age 6. They are so understanding of this all, but of course miss us both deeply when Ceci is up in Children’s Hospital. The hospital is an hour and a half away from our home. So, getting up to see us when we are there is almost impossible between dad trying to work as many hours as he allowed during my time off and school. So being able to come home over night to stay with my boys helps make this all bearable for us all.
I apologize for not updating in so long. Ceci has continued to deal with so much from the illness that hit her back in April. Unfortunately, her side still has not healed, so we have continued to make frequent visits to see her surgeon in Peoria.
She is going to need another surgery to reconstruct her cecostomy site and close it off. We finally came to this realization with her team a week ago. We have been doing wound and dressing care since April with no closing in site.
This is very frustrating for Ceci. Another surgery already being planned before this big surgery is even done….. The past 2 years have been so hard for her ☹
As of now, we will continue to do side dressing changes until after she recovers from this surgery. Once she is given the okay we will have to prepare for yet another surgery sometime in the fall.
Now that we talked about the majority of the bummer stuff, let’s talk about some good things 😊
Ceci has been doing good the past few days. We had a week of fevers, vomiting and pain last week so I am very pleased to report that she is doing good today.
When she is feeling up to it, we have been using the amazing pool lift that her Auntie got her, and we have been spending these hot Illinois days floating around a nice cool pool in our backyard.
Not only is this fun, but it has been so good on helping relieve some of her side and back pain. It really is therapy for Ceci. The majority of her day is spent sitting up in a power wheelchair all day and her back muscles really hurt by the end of the day.
We used to get her out of her chair a few times a day to do PT but with her Osteoporosis causing repeated fractures to her legs it got to the point that we were told to move her as least as possible with transfers. But the pool is so good on her legs.
We had a bigger pop up pool at the start of the summer but found out it was defective. So, we had to get a smaller one. It is doing the job but were hoping that with some saving in the next few years we can get a permanent above ground pool for Ceci. The benefits for our girl would be so well worth it 😊 Can you tell how happy I get when I find something that helps our girl ❤
On top of swimming we have been spending time cooking out with extended family and the other day we went and seen Toy Story 4 together. It was so good! The kids really loved it.
It is a movie that has made it through our family for sure.
I can recall my 27-year-old brother running around the house with his Toy buzz light year and woody. Then he passed it on to Ceci and then it made its way to Aiden and now he and Nick share it.
It was nice getting the chance to watch a movie in the theater as a family. We really do not realize how much gets taken for granted, until you’re not able to do these things.
With all the appointments between Peoria and Chicago and me and dad trying to work as many hours as possible our life always seems like a hectic shuffle to the completion line.
It’s nice to slow down and put things on the back burner every now and then.
Well everyone I have much more to write about but I do not want to make the biggest update ever 😁
I’ll be back soon with another update on our girl and our family soon.
Hoping everyone’s having a great Tuesday!
Lots of love and hugs,
Alexis, Ceci and our family
~Spina Bifida Fighters and Survivor ~