Hello friends and family!

Note: If you follow us on Facebook, this is a repeat.

I had a monkey on my back… to update Bianca’s beads of courage since being discharged in Nov of 2022!! Anyone curious what Bianca’s last ~14 months look like in beads? Though I lived it… still eye-opening! If you’re not familiar with Beads of Courage… check out the attached picture from November of 2022. Each color/bead represents one of the items below, or other items not listed here (such as heart surgery, blood infusion, etc).

Hospital admission – 2
PICC removal – 1
Clinic visit – 58
NPO – 31
Dressing change – 28
Echo – 25
Emergency – 4 (two bone breaks, NG replacement and G-tube replacement)
Fever/precautions – 2
Learning new meds/parent education – If this is per day/big transition, then 4; if this is per med, then 21
Nutrition/diet transitions – 7
Overnight stay – 3
Poke/blood draw – 29
Procedures – 1 (cath and biopsy)
Anesthesia – 2
Test (X-ray, EKG, pacer check) – 19
Therapy (PT/OT) – 13
NG removal, 2; NG placement, 2; G-Tube placement – 1; G-tube replacement – 2

Following medication schedule – this is every day (for the rest of her life…)

Special accomplishment –
1. Graduating from using the walker to walk and giving the loaner back to the hospital!
2. Graduating from daily formula feeds and using G-Tube only for meds!
3. Starting preschool and transitioning to five-days a week away from mom/dad during the day!

It’s been a big, busy year+. We’re so proud of you, Bianca May. Keep being your spunky, strong, and incredible self, little girl! 🏥🎉🏆👑🩺🩻💉🩸🚀🌟