January 10th updates

Good evening Dearest friends and thank you for coming back by to check up on Ceci and our family. 

It’s nearly 10:30 pm here and we are hanging out in Ceci’s room.

She’s watching Grey’s Anatomy (her new favorite show to pass the time until Strangers Things Returns) and I just finished up some work.

I’m listening to the hum of her IV pump and am feeling grateful that the little green light on her pump is staying lite continuously and isn’t blinking and screeching at me again.

Having to fight an iv pump and Huber needle after a long day can be a furious and mentally draining battle 🤪 LOL.

And for the past few weeks Ceci’s Power port has been a pain in the butt!

Insurance only covers the off brand of needles for her port and with Ceci’s port being so positional it likes to spice things up and work with no issues one infusion- and then require 4-5 saline flushes, maneuvering of the tegaderm  and needle and some heparin to get it to work on the next flush.

Darn thing! Oh well 😊 At least it is keeping her from living in the hospital again.

Especially the past week.
Ceci has been fighting another urinary tract infection and it was causing quite a bit of issues for our girl 

She’s been feeling miserable on and off for about a week now.

She’s been going between awful bladder spasms, stomach pain, nausea, feeling very tired and uncomfortable. We have also had to irrigate her bladder over and over again to get any urine to pass through her Foley catheter and it was a minimal amount.

She scared the mess out of me several times this week when I went to check her Foley bag and instead of seeing a regular amount in the hundreds it was just drops that were present.

We have had to double up on her fluid infusions. So, she’s getting 2,000 mls daily for now. We have to keep her hydrated to keep her from being readmitted 

Her wonderful Pediatric doctor ordered another antibiotic and today we were back in Peoria to see the temporary Urologist that they have seeing patients until they get a permanent chair

Ceci’s still tiring easily but she’s starting to feel better.

The urologist we seen today was kind and had a lot of recommendations.

We are going to go back to irrigating Ceci’s bladder on a daily basis, with 50 ml’s of sterile saline to see if this may help with preventing these never ending UTI’s she’s continuing to have.

Also, she’s order another Cystogram on Ceci’s Bladder and kidneys to see how things are functioning, now that her Scoliosis surgery is over and her curve is greatly decreased. Her body has went through a major change and her internal organs have been moved from the position they were in for many years.

With this scan we’ll be able to see how things are lined up internally now, and there was even some discussion about seeing if her original urinary stoma (Mitronoff) is viable now that her curve is straightened out. This would be huge!

Honestly since we let it close off last December- due to repeated infections and abscesses, it being an asset again hasn’t crossed my mind. But she made a very good point.

When Ceci had a Cystogram done 3 months ago to check her bladder, the radiologist noted that besides her opening closing completely off on her stomach, the pathway was still open and functioning.

We talked about several different options and concerns today, but the 1st thing we need to do is have the testing done to see what her new baseline looks like.

So, they have scheduled Ceci for Friday, January 25th back in Peoria. We’ll talk with Urology and Pediatric surgery once we have results to see what’s next for her big intestinal and bladder surgeries.

We have been in Peoria so much lately and that will continue until March.

As of this week we have appointments and testing WEEKLY for the next 5 weeks.

Today we seen Urology in Peoria.

This Wednesday 15th- a procedure back at Children’s Hospital in Peoria.

Friday 25th- Her Cystogram back at Children’s Hospital in Peoria.

Monday 28th- Neuropysch appointment and full day testing back in Peoria.

Monday Feb. 3rd- Nephrology Appointment and 24 hour urine results.

Ceci and I are going to be traveling back and forth for a while.

Unfortunately, with how much our little fighter has gone through the past year, we have gotten used to being in the car and driving. We just hope that the weather will be nice to us and that we’ll be able to keep up with Gas prices and expenses.

With all of our other supply and medication expenses we are struggling a bit. Ceci absolutely needs to be there for these appointments so we will make due the best we can.

While we are speaking about expenses, our family has to send out another huge thank you to our Dearest friends that made sure our family had a special Christmas this year <3<3<3

Thank you so much again!

Our family had such a special Christmas and it was due in big part to our friends here.

I have pictures I’ll be posting soon 🥰 Thank you for bringing such joy to our family after such a stressful year. It meant so much to us.

Well dear friends Ceci’s Pump is beeping so it’s time for me to sign off for now.

We hope that everyone is doing well.

Thank you for continuing to follow along Ceci’s Spina Bifida Journey,  and for being such a support through your posts of encouragement and love.

We’ll be back sooner than later 🤗

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

~Spina Bifida Fighters and Survivor~