Good morning dear friends and happy Tuesday.Thank you for checking back in with Ceci and our family ❤
Ceci and I woke up today feeling out of sorts and we both think we know why.
Today was suppose to be the big day….. the big day that we have been waiting for….. the big day that we’ve been dreading…. her 55th surgery…. the surgery to hopefully bring her some relief from the pain….. her scoliosis fusion.
It’s frustrating that after waiting months to get her scheduled we are back to waiting again.
Ceci’s dealing with the side and back pain almost everyday now and the only thing we can do is try to keep her as comfortable as possible until the day comes.
As of now her Scoliosis Fusion has been moved to Tuesday, July 23rd.
It seems so far away right now, but we know it’ll be here before we know it. We’re frustrated but I just keep reminding myself that this will give her a summer break that she really needs at this point and this will give us some more time to prepare.
Realistically Ceci’s body is not strong enough to go through something as big as this surgery right now.
Weeks ago when they took her into the operating room to explore her wound, she was only under anesthesia for an hour and a half and her body could not handle it.
They had a hard time waking her up, she couldn’t stop coughing (she wasn’t even intubated) and they ended up having to put her on oxygen.
This was the very first time she’s ever had an issue with anesthesia even after being put under more than 100 times for surgeries and testings. So this was very scary for her medical team and for us.
So you can see a 6-8 hour surgery where she’ll be put under anesthesia deeply and will be intubated is definitely not an option right now.
So we will be patient and wait until God says its time.
After this 2nd bought of influenza that left Ceci very ill and caused her tube to punch through her abdomen wall, she’s continuing to recover her at home.
Mentally she feels up to going back to school and being back with her friends but physically her body is still fighting her.
Yesterday was one of the hardest days we have had since coming home from Children’s Hospital.Ceci was in a very high level of pain, was shaking, vomiting repeatedly, crying and experiencing severe light sensitivity.
My heart was breaking to see her in so much pain again.
I ended up helping her into the shower to see if that would help, but it didn’t.So we got her into some comfortable clothing and wrapped her up in warm blankets.
After another dose of pain medication and rubbing her head and neck for 15 minutes she finally fell asleep.
She slept for almost 2 hours and when she did wake it was like nothing ever happened. I was very thankful for the relief from the pain for her but of course was concerned it would come back.
Thankfully the remainder of the evening was quiet.
Before we had this awful experience yesterday I was hopeful I could have Ceci’s grandmother stay with ceci this week so that I could try to get back to work.But yesterday proved that she needs more time to heal and she needs more time with me by her side.
So I will not be able to return to work this week.
I usually work full time but when ceci needs me, I’m right by her side through it all. I haven’t been able to work since the beginning of April and most likely won’t be back until May.
With this being a very trying time financially for us, I want to send tremendous gratitude and appreciation to everyone once again that has helped support our family and has helped us keep our heads above the water while we fight to get Ceci well again.
The love and support will never be forgotten. Thank you so much ❤❤❤
Well I need to sign off for now.
In the midst of all this craziness we’ve been doing some remodeling in Ceci’s bedroom due to her tiles cracking and it being unsafe to walk on.
Well we found bad news once we started lifting up the tiles.
We found water damage coming from her double bedroom doors that has caused extensive floor damage 😭
It has eaten through the tiles (what caused them to crack), through the underlayment flooring and through the floor foundation.
So currently ceci has some holes in her floor that you can see the basement through.
It’s another huge stress that we do not need right now but we need to deal with.
So today and tomorrow I need to see about setting up some estimates with contractors to find out how bad the damage truly is and what kind of cost we are looking at 😖
Any suggestions would be greatly appreciated.
I’m so lost with all this.
Prayers please for continued healing for ceci and for things to get brighter in our situation.
We are looking forward to some sunshine for sure 😜
We hope everyone is having a much better day.
Lots of love and hugs,
Alexis, Ceci and our Family
~Spina Bifida Fighters and Survivor~