Monday, January 20, 2014

Moving Mountains

The book "Oh the Places You'll Go!" by the one and only Dr. Seuss, has applied to my life in so many ways. Right now, it is cheering me on saying, "KID, YOU'LL MOVE MOUNTAINS!" And that is just what I need to do. I need to move an impossible mountain or two. 

The end of 2013 came to a screeching halt with one phone call from Calvin's Immunologist. Some of the test results were back and they'd found a problem. Another diagnosis, our son has an IgG Immunodeficiency severe enough that he'll need monthly transfusions or weekly injections of IgG replacement therapy. As I heard these words falling out of the doctors mouth, I could hear myself trying to slow my breathing. Trying not to cry, trying to make the news not so bad. There was a lot of silence on my side of the phone as I listened to him explain that basically Calvin is not able to make enough antibodies to protect himself and fight off germs. Furthermore, he cannot make antibodies for some vaccines like the flu and although he showed ability to respond to some of his childhood immunizations he was not able to keep them. Therefore he is a child with very little, to no protection against germs. And complicating all this is his asthma, because the medications used to treat asthma actually worsen the immunodeficiency, so good luck with all that. Merry Christmas and oh yeah, make that a Happy New Year too.

I hung up the phone and cried. When I finally choked out the message to my husband he had a completely different reaction. His logical self kicked in and he knew that even though we had an answer and a suggested treatment plan, it really didn't change anything. He said, "Nicki you can't freak out and put Calvin in a bubble, and we don't have to rush into anything. We have been taking care of our son for seven years without knowing, so this changes everything and nothing." Brett was right, he usually is. 

So, although the year 2014 is full of uncertainty for us, there is hope. I need hope. We have come to a fork in the road– to our left is monthly transfusions or weekly injections of IgG replacement therapy, and a regimen of prescription drugs, to our right is an aggressive chiropractic care plan with unconventional and alternative therapy's. Given these two choices, we decided to explore the right before we head left. We've been as far to the left as we dare go for the moment and going back will be our last resort.

Transfusions come with their own set of problems. Calvin's body could reject them and there's a host of side effects. It doesn't fix anything permanently, it puts a giant and expensive bandaid on the problem, week after week, month after month. His body could become dependent on the replacement therapy and stop making its own antibodies. So before we turn to transfusions for help, I have to know we tried everything else first. We have to know it's our last resort with 100% certainty. To many, we may seem foolish for not jumping onboard with the transfusions right away but we've lived with Calvin for seven years and nursed him back to health over and over again. If his lab results are reading levels severe enough to warrant transfusions; yet we've managed to keep him out of the hospital unlike so many other children with his diagnosis, than we're doing something right with him. 

We do a lot of preventative care, vitamins, herbal treatments, chiropractic care and our germ protection is second to none. It's a comfort to know I've been doing something right this whole time because when you have a super sick kid, you think the opposite. You beat yourself up as their mother because if they're so sick all the time, you must be doing something wrong. It's a relief to have an answer and that the answer doesn't mean I'm inadequate, it means he's broken by genetics and quite frankly by today's sick care too– a pill or transfusion to fix everything. 

We might still need to utilize pills, inhalers and transfusions in the future but I have to believe there is more than that to make Calvin healthier, to make it possible for him to live a BETTER life. I sit back and recall the countless doctor appointments where they prescribe pills and inhalers and it makes me think, "Is this the BEST they can do? Is this really all they know to do?" When I'm waiting for the dentist to fix Calvin's tooth decay, when I run my hand along his hairy little back, or when I realize he needs new clothes but he hasn't grown, I think "What are these medications doing to him?"

So many questions, so many emotions. It's funny how all those years, people kept telling me the germ exposure was good. How he'll get all these illnesses over with early and have a stronger immune system for it. They were so wrong, but who can blame them. Who would think there was a genetic defect causing all the problems. That Calvin would never be able to benefit from being sick or getting vaccinations, unless he is supported by someone else's IgG in the form of transfusions. 

I deal with so much anger. Why can't Calvin be healthy? Why are we robbed of a normal, happy, healthy childhood for him. It boils my blood to see the way I'm looked at sometimes too. I know I've looked like a fool to people often, been made out to be an overprotective mother coddling a sheltered child. If only that were true, and I could just ease up and he'd be fine. Unfortunately, I was right all along. I had the right to freak out about the stomach flu going around because for someone like my boy, that stomach germ can last for eleven days. You try eleven days of fighting the stomach flu with your child and see if it doesn't almost kill you both.

I try not to let it bother me because I know that people who have this opinion of me don't know any better. They've not gone through this mess and are not aware of their own germ control inadequacies because it doesn't negatively affect the quality of their life like it does ours. Sometimes it's hard to not let the words get to me, like the one time I was describing Calvin's affliction and someone's response was to say, "survival of the fittest." I couldn't even respond to them. What is that supposed to mean? Is my son unfit to live so he should die rather than pollute the gene pool with his curse? But this also brought me to another conclusion. Sometimes people say stupid things because they're being stupid. Luckily, for every idiot out there, there's a loving and caring person who wants to help out or support us. 

In the end, we make our decisions like any self respecting parent. We try to do what's best for our child and not care what people might think. Sometimes desperate times call for desperate measures. So going forward, we're going to try a much more well rounded approach. We will still consult with several professionals, his asthma specialist, the immunologist and our current chiropractor, but now we're adding a well known certified pediatric chiropractor Dr. Anthony Ebel. We will rely on our traditional doctors for emergency care and to rule out such pulmonary diseases like PCD and Cystic Fibrosis, both of which seem less and less likely each day, but for Calvin's daily health we will rely on specialized chiropractic care. There is clearly something not working in his immune system, something the drugs have only sabotaged or propped up, and for once we're going to go after the source of the problem as opposed to just managing the symptoms. 

We're not jumping into transfusions or injections without being certain that's the only option. We've been doing this for seven years without a diagnosis and without transfusions. I've witnessed how changes in Calvin's diet and sleep, getting him chiropractic treatments and giving him herbal oils, have improved his health. I can't ignore that. I can't pretend Western medicine is the end all be all, because it's not. It's amazing in an emergency. It can save your life– but from what I can tell, they can't keep you healthy for any period of time. 

As we continue to research and listen to all the possibilities, we'll make a choice, and keep making choices as things unfold. I just need Calvin to live through it all. We will do whatever we can to give him the best health possible. There's a chance we could fix everything, or not but we need to try and take the chance. Any improvement we can make, will be a great success in my mind. There is hope. If I'm living in a Dr. Seuss book, I'll leave you with, "Today is our day! Our mountain is waiting. So... we'd best be on our way!"

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