I'm the Rainbow Baby!

I think anyone who knows our Rainbow would agree that the kid has personality. He lights up and fills up most any room he enters. He's always been that way, a charmer.

We really never dreamed that we were only seeing part of what he had to offer.

Rainbow had his first immunoglobulin infusion two weeks ago. I'm not even gonna try to explain how hard it was... it was hard. He was sick for four long days after, while his parents cried and fretted and wondered if we had done the right thing to put our two year old through this.

As he started to emerge from the headaches, fever, and nausea we were so happy to see our bright light return. Then something new happened. He started to run circles round and round the back yard, pretending to be an airplane, chasing his daddy, winning all of the races "I win!" His baby sitter started telling us that he was different... that he has more energy. Then, this week, he started to eat. As in first breakfast, second breakfast, elevensies, lunch... you get the picture.

Yesterday Hubby and I were talking and failing to notice Rainbow's adorable antics so he shouted "I'm the Rainbow Baby!" with a huge grin...

I think if his caretaker wasn't absolutely insistent that the kid is different we wouldn't believe it. We would tell ourselves that we were imagining it, that it was wishful thinking. After all, he has always been incredible... always.

Hubby and I have each sat on the floor of the bathroom while he bathes most every night marveling at the fact that the only medication he's taking is Zyrtec. Never, never in his life has he been on only an allergy medication!

We were so afraid, afraid of the side effects, the horror stories, the many many things that could go wrong. It was rough and in two weeks we do it all over again but for today I am basking in my Rainbow's light... and trying to keep up.

Until next time...

Come at me bro

I joined two facebook communities for people with Primary Immunedeficiencies (PI). Some days I think that was such a total and complete mistake. One of them is a community for "Zebra Moms." Of course this is where parents facing the fear and battle of raising an immune-deficient child go to tell their horror stories... no one else understands, but I'm starting to wonder if I can continue to read these stories and maintain my sanity.

I've been reading about how these kids have to stop their infusions because insurance wont pay or because a doctor just isn't convinced that there is "actually" anything wrong. It makes me crazy. I reply over and over and over "trust your instincts momma and keep fighting until the doctors do, too" It's everything I wish I had done and everything I'm doing now.

These posts have also made me realize something. Yes, we are battling the insurance company, yes, this treatment is going to be hella expensive, yes I'm terrfied, yes yes yes...

But we also have two doctor's offices going to bat for us, calling every available resource, faxing in paperwork, filling out claim forms, calling us to check in, emailing every other day. I have a "little" brother who organized a gofundme campaign that has raised more money than we could ever fathom and is threatening to kick someone's ass if more doesn't come in (ya gotta love that about brothers). And we are far from defeated. Unlike those who are unuse to having the crap kicked out of them daily we get up of the ground, wipe the blood from our wounds, and say "bring it on." We're fierce as all hell people and we are going to get our child what he needs, period.

I suppose there is some twisted sort of power that comes from knowing the worst. The worst is not a second mortgage. The worst is not weekly or even daily trips to a phlebotomist or IV tubes connected to my son. The worst is a casket.

I'll do whatever it takes. That, my friends, is power.

Until next time.