Good Friday Evening everyone 😁
I wanted to post a quick update before I unplug for the weekend, to spend some time at home.
I’m here at home with our 2 youngest guys Aiden and Nicky James and dad is back up at the hospital with sis for the weekend.
She loves when we switch off for the weekends because even though she’s a sweet kiddo her 14 year old teen hormones get the best of her sometimes and she needs a mom break 🤪🤣🥴 Thank goodness for dad.
Ceci’s doing okay today. Her abdomen is still causing quite a bit of pain so she’s been getting the oral morphine every 4 hours as needed and as long as she’s not moving around too much in bed, it’s been helping.
We did get some news that we didn’t want to hear today but it’s not too bad compared to what’s been going on the past 2 months.
Ceci’s urine culture came back positive for another urinary tract infection and they diagnosed her with Stress Alopecia.
She’s been losing her hair in handfuls so we’ve been trying not to brush it much.
We thought it was the 2 months of hardcore antibiotics but her doctor told us it’s all the surgeries and infections she’s had. It’s been too stressful on her body and there’s nothing we can do to stop it.
We don’t know how much of her hair she’ll lose until her body gets past this but Ceci took it well like she always does 😊 Said it’ll be fine she’ll rock short hair if need be. And we can always dye what’s left a fun color. I swear I love this little girl so freaking much!
They are treating her UTI with more antibiotics and are keeping a close eye of her blood counts.
Still looking good on the spinal fluid Cultures that were recollected this past Tuesday. No growth and we should have finals tomorrow.
Ceci’s been in bed since Tuesday due to the pain, stitches and staples in her abdomen and back. But PT and a worker from the company that made her Scoli brace, came by today to reconstruct the brace a little to see if we can get her comfortable in it again.
They didn’t try it on or out today but it sounds like the plan is to try to get her in it and at least sitting up on the bed tomorrow.
Then in the next few days work to get her back in her wheelchair moving around to make sure she’ll be stable with her shunt.
There hasn’t been talks about discharging her home yet but if we can get her back up in her wheelchair with stable vitals, for at least 2 hours and minimal pain medication I think we’ll be so much closer to crossing the home line 🥰
It would be great to bring her home.
Well guys I have so much more to share but it’s movie and popcorn time with my boys.
I hope everyone’s having a great weekend.
Please continue praying for our girl and family. We miss each other so much!
Lots of love and hugs,
Alexis, Cecilia Marie and our special family 💜
~ Spina Bifida Fighters and Survivor ~