Team Maggie Update Day 27
Maggie had such a fantastic day yesterday, as she turned 5 years old.
The best birthday gifts she received today weren’t actual gifts. Today we found out that if all continues to go as it is now we will be discharged to the Neely house on Wednesday!! After 6 weeks! Yay!! Also, today with labs they checked Maggie’s retic count. This is what tells us if Maggie is making her own red blood cells. Keep in mind her number has always been zero, she’s never made a red cell in her life. Today it is 5.4!! That actually read HIGH on the lab sheet! I immediately burst into tears when the nurse showed it to me! This is what I have been dreaming of since the first moment I heard a doctor say the words Diamond Blackfan Anemia. I am so grateful. There really aren’t words to describe it.
Maggie’s blood pressures have been great the past 2 days, she’s taking all her oral meds like a champ (even cyclosporin) and has been unhooked from the iv pole for a majority of the afternoon yesterday and today! Tomorrow (August 20th) I will get central line training and will meet with the visiting nurse who will be coming to the Neely house to teach me how to do Maggie’s TPN and also checking her blood pressures every day.
This has been the happiest day of my life!! Thank you all so much for loving my little girl!!! We couldn’t do this without all your amazing support!
Here’s a collage of pictures from yesterday
One of the cupcakes one of the nurses made
We don’t have a final total yet from the Miguel’s fundraiser last night, but it was great, and thanks to everyone who turned out! There was a waiting line to get in. We’ll have a update later tonight hopefully on the total collected! Thanks to Channel 5 for coming out and filming the call to the Rudnickis. You can see the story by clicking HERE
This is the part of the 32 foot birthday card that everyone filled out for Maggie!