Good evening dearest friends and thank you for coming back by to check up on Ceci and our family.
Before I update about how our girl is doing, I wanted to ask that everyone take a moment to stop and say a prayer for Ceci.
Tomorrow morning, we head back to Peoria- Children’s Hospital again for some very important testing on sis’s Kidneys and bladder and to be honest we are all a bit nervous here tonight.
Depending on what this testing shows Ceci could need a very big Bladder surgery to reconstruct her bladder and some additional work or Ceci could need a much smaller surgical procedure that would most likely be outpatient.
You can guess what we are all hoping 😊
It would be wonderful for Cec to be able to go home the same day of a surgery. It’s been a long time that we were given that choice and I know that our girl would LOVE to heal in bed instead of inpatient.
She will still need to have surgery on her side and on her intestines but depending on this outcome this could be a smaller surgery as well.
Please pray hard dearest prayer angels and good thought warriors, please send out positivity for nothing but good results. Sis needs a win! ❤
Our girl had a good day today but tonight she was experiencing some unexplained tummy pain especially when I tried to lift her in bed to reposition her.
Caught us both off guard and she had to catch her breath a little to get the pain to pass. Brings us back to these concerns about the thought that our girl is still producing these little kidney stones and it is causing a lot of problems 😥
This weekend we will be performing a 24 hours urine test to see if the calcium levels are still elevated along with the protein.
This will tell us if Ceci is indeed continuing to produce these nasty calcifications and what we need to do to make her feel better and prevent bigger stones.
She’s still getting daily Port Line Fluid Boluses to make sure we are keeping her hydrated and to prevent her tachycardia from getting worse.
Her drinking continues to be a bit of a challenge but she’s doing better than she was when she was still in the hospital. The amazing smart water bottles that our sweet friends here got her, have helped tremendously!
Especially tracking her input.
We also took the advice of a friend of ours and ordered bottled Culligan water with a dispenser. Having ice cold water right at her hand has been another encouragement to get her to drink and to reduce drinking juice. She loves having it cold and ready and so do the boys.
We will continue to encourage her as much as we can, but I swear I think there’s days when she wants to beat me and her dad with her big body pillows LOL 😂
I know I know she’s a teen and that’s the normal sentiment but I think having so many health reminders makes her want to beat us just a bit more hehehe.
On another note, I received paper work in the mail today regarding Ceci’s first year of high school which is coming up quickly. Noooooo!!! Where in the heck did all this time go?!?!
Do you guys remember when I would post little videos of momma’s singing her favorite Disney movie songs and now I am planning her 1st set of high school classes. My baby girl is all grown up 😉
She’s super excited because next year she’ll he turning Sweet Sixteen and we started talking and planning a special party in 2021 for her special day. She’s even picked out a theme and has been filling up my pinterest with some beautiful cakes, dresses and decorations.
Her party theme is going to be Under the Sea and she’s hoping for the colors Coral and Mint to be scattered everywhere.
It’s May 2021 and I now that we have some time away before it happens but seeing her light up when she talks about it and seeing how happy she is planning it with me, has given my heart such joy. It’s the perfect distraction from all that is ahead this year for Ceci. Grateful that the Lord put some positivity in our pathway and joy to our hearts. ❤
I want to say thank you to our friends that have emailed me about their experiences at University of Iowa Children’s hospital and with the pediatric Urology staff 😊 I haven’t gotten a chance to sit down and write ya’ll back yet, but please know that I have read each email and appreciate all your advice.
I feel confident with us switching Ceci’s urological care to U of Iowa and we hope that her 1st appointment in March brings a new chapter of care for her with her most difficult medical challenges and these tests tomorrow help with this transition.
I’m so very nervous about tomorrow.
Well dearest friends, I have so much more that I would love to share and write about but it’s nearly 10:30pm here in Illinois and I need to try to get some sleep.
We’ll be dropping our little guys off at school tomorrow and then we are gassing up and heading to the interstate.
Dad just told me that they are reporting more snow tonight through tomorrow so please also pray for safe travels.
Be back sooner than later.
Lots of Love and hugs,
Alexis, Cecilia Marie and Our Special Family ❤
~Spina Bifida Fighters and Survivor~
We have had some ask about ways to help ❤
Also Ceci’s Medical supplies list