Tell me how I explain to a 5 year old that he will have blood taken every week for a month or more.

Even Dr. Wonderful can’t help with that. She’s prescribed two new drugs to assist Gage’s body with the concentration of his urine. And his renal numbers need to be checked. One of the drugs can cause his Creatinine and BUN numbers to rise (not a good thing) so they must be watched closely. In fact, Friday, the day after the day in Bama, he will be stuck again to have baseline labs in town for Dr. Wonderful to work from.

Dr. Wonderful knows how difficult it has been for us with Gage and The Urine Factor. So, compassionately, she wants to help us help Gage. She wants to balance quality of life (ours and Gage’s) with the risk of letting those numbers rise a bit. So we enter the balancing act. I suppose if it were any other doctor I might be freaking out. But I’m not. I’m okay. I trust her. She asked me if I was okay with the risk…and I said: ”well…I’m okay if you are.”

Gage was a delight to be with today – even if it involved needles and a trip to a UAB Children’s Hospital. I brought a new sticker book, a book of maze’s for him to complete with crayons (don’t ask me how his vision disorder doesn’t effect him doing those, but he’s great at them), snacks, new kid CDs, Sally (the Ugly Orange Kitty), and his blanket and pillow. We could have been going on a big adventure anywhere talking about the highway construction, big trucks, how fast to drive, buildings, trees and finding potty’s quickly. But we weren’t. We were on a medical trip with implications.

And on the return trip I had a couple of hours to think as he slept with a shirt over his eyes to block out the light. I thought, what a sweet boy – innocent but not, all at the same time. As a parent it makes me sad that the reality of his world runs between that of a normal 5 year old and doctor visits, therapy, medical monitoring and drugs.

So, at the lab when Gage says “no neeedddles Mommy” with tears in his eyes, I don’t know how to explain to him in a different way than I have, in part, several times.“I know, I know…if I could take away the needles I would honey, but we need to do it to keep your body safe.” I know it’s my reality to help him cope, but I have to be honest, it still breaks my heart every time I have to utter the words.

Julia