The Wait Begins

I took Monkey yesterday for his follow up labs. Two weeks. That is how long it will take to find out whether we are okay or have signed up for a whole new fight. Monkey has been fighting infection after infection since Christmas. Nothing severe, but they never go away either. We saw a new immunologist in February and after my pleads for more testing, she ran his antibody levels again.



Last year, Monkey was fully vaccinated and responded well to Pneumovax. When we ran the labs in February, he only had sufficient antibodies to 3 of 14 titers. Monkey received another Pneumovax shot (which was totally miserable). We waited the 4 weeks and had the labs drawn again. As we wait, he has green goop coming from his eyes and nose. What is so frustrating is that we just finished the stronger antibiotic less than a week ago. That was the 8th antibiotic since Christmas.



If he doesn't respond, we know that his immune system is not working and it explains the infections. It also means the possibility of monthly IVIG infusions and more sickness. If he does respond, his immune system does work and we begin the whole cycle of infections and testing all over again. I am worried he will respond and then it will take another year to find out if he maintains the antibody levels. If he doesn't keep them, I don't really know what happens then.



I haven't really considered the option that his levels will be good and that the infections will stop. It has been over two years since this struggle began and I just can't see it ending that easily. It has taken over my life and filled me with worry and fear for my son. I have held him too many times as he has endured the needle sticks, PICC lines, and scans. So many tears have been shed by him and I. I hope and pray that the news is good. For now, I just wait.

The Moon

"Mama, where is the moon?"

"It's not out yet."

"Mama, Noah is talking to me."

"Really, what is he saying?"

"He says to get him off of the moon."

I only wish I could get him off the moon.

"Monkey, Noah isn't really on the moon. He is an angel in Heaven. Noah is with God."

"Noah loves God. Why is Noah with God?"

"God needed an angel so he grew wings and flew to Heaven."

I don't know what to tell him. I don't dare say Noah was sick as Monkey understands sick. I don't want him to think something will happen to him. How do I explain to a 3 year old what happened to his beloved little brother?

These conversations keep occurring. I am not sure what triggers it for Monkey. We can be in the car, lying in bed, or just playing outside and he starts asking about Noah. It breaks my heart and makes me whole for just a few seconds all at the same time. I love my boys so much. How I long to hold them together just one more time.