Our giiirrrlll 😔

Poor ceci is fighting yet another UTI this week.

We received the call from her Pediatrician yesterday that her analysis came back positive. We are waiting on the culture to find out how bad and what type of bacteria, but for now he’s started her on Cifdinar.

We’re having to play the medication shuffle because ceci is on several different types of medications including antacids and lots of vitamins.

With this medication, she can not take any antacids or vitamins- 2 hours before taking this medication and 2 hours after talking the medication.

So we’re doing a whole new crazy meds schedule until she gets off this medication. So much excitement sometimes lol 😏

Some good news, most of the parts needed to fix ceci’s power wheelchair have been ordered 😁

Medicaid sent the prior authorizations immediately so we were able to order them. When ceci’s in the hospital for her big surgery on the 23rd, I will drop off her chair to them a few days later and they are going to work on getting what they can fixed.

Unfortunately we are still trying to find funding to cover the Elevator piece of her chair, the most important piece. $4,098 is not easy to come by at all 😫

I wish we didn’t ALWAYS have to fight for vital things ceci needs. It’s so frustrating and breaks my heart that kiddos with disabilities can not get all the resources they need at fair and affordable prices and that insurance always falls back to- well they don’t really need that. They can manage without it!

We found one of those foldable power wheelchairs that I was talking about 😁 on Let Go for $350. So I’m trying to find the funding for that as well. Having a back up chair for ceci is vital, with everything that’s been going on.

Ceci is doing okay, all things considered but she has been having bladder spasms, fevers, vomiting and headaches on and off this week. We now know why and hopefully the start of these antibiotics yesterday wil have her feeling better today and the next coming days.

Please continue to pray for Ceci and for what’s ahead for her very soon.

We’re all starting to get anxious at home since our girl has less than 2 week’s before she goes back under the surgeon’s knife and our family is separated by distance again.

Be back soon.

Lots of love and hugs,

Alexis, Cecilia Marie and our special family 💜

~Spina Bifida Fighters and Survivor~