Wednesday, November 26, 2014

Write Something

I like this place. I can say what I want and let it go where it will. I've missed writing. There's been too much to say and yet nothing to put into words these past months. Since my last post I've been blown like a leaf in the wind, leaving little time to collect my thoughts. Tumbling around from one thing to the next, trying to balance, hold my head up and muttering a Meet the Robinsons quote, "keep moving forward." I've felt quite a bit of fear, a breaking heart and then moments of being blissfully happy, because it's after our darkest days when we can truly feel the light.

As Thanksgiving approaches I could give a crap about the turkey or the feast. Quite frankly I'm not particularly fond of this time of year because of the illness and all the people who carelessly spread it, the chaos, needless hustle and bustle... but the real meaning for this holiday matters to me. Looking at the year in slow motion, I feel grateful for so much. 

You see, life changes quickly in the ordinary instance. Snap your fingers and everything can change. It takes your breath away every time. In April, my strong Dad had a massive heart attack at age 65. He could've been a goner but luckily there was minimal damage and the doctors saved his life with five stents. In June, my sweet Mom was diagnosed with Lung Cancer at age 63, never having smoked a cigarette in her life. A section of her lung was removed and it was thought to be a best case scenario but it's not. There is still cancer growing somewhere in her body although we don't know where. My world was shaken because for some dumb reason as children, we think our parents are invincible. No one is, obviously. I love these two people dearly and selfishly wish they could live forever. 

So there's been that, it's pretty big and ugly but we float on. We have to. Find the silver lining. My parents are not six feet under, so we'll make the most of every moment we can. It would be great if I weren't eight hours away but I am thankful I can pick up the phone and hear their beautiful voices, although sometimes it makes me cry. When I finally get chances to wrap my arms around them, I hold them longer, soak it in and go back for seconds sometimes thirds. It probably gets awkward for them, lol. 

It's often hard in this life, but that can make you a better person if you let it. It can make you appreciate what you have, when you have it... and that my friends is a gift. After all the years of struggling with Calvin's health, we feel real happiness when we finally have moments of normalcy. When we get to venture out and do normal family things together, we are very grateful. There have even been moments of complete bliss when it hits us how much Calvin's improved. We've been climbing the mountain and it's been tremendous work, but worth it! 

For about eight months he has seen a chiropractor three times a week. The last two months we've been able to go down to two times a week. He used to be on quite the asthma inhaler regimen:

2 puffs Advair twice a day
4 puffs Flovent twice a day

Do the math and it was 12 puffs of inhaled steroids daily. Madness. Since February, we have slowly weaned him completely off and as of October he hasn't used an inhaler, maintenance or emergency. This is the first successful time we've been able to fully wean him off since he was a sixth month old baby!!!! After eight years of expensive meds, four exclamation points isn't nearly enough. Right now, he's only on two prescription drugs, Singulair and Flonase. We hope to discard these someday too but we won't make an attempt until Flu season ends next Spring. We don't want to push our luck. 

Yes he has gotten sick frequently, but not too much more than the average kid and he comes out of it after a chiropractic adjustment. We've been watching him go up and down for months now. He'll start to get ill, get adjusted, show improvement and we move on. There has been no pneumonia, no emergency meds and no prednisone. It hasn't gotten critical. The chiropractor snaps Calvin's body into place (removing the subluxations, look it up) and his sinuses are able to drain, his body is able to expel and recover on it's own like it's supposed to. The goal is that Calvin's body will heal itself if we can support it in a non-invasive healthy manner. 

We've made other changes as well. He eats a raw, whole, organic diet as much as possible with limited sugar and processed foods. The only cow-made diary products allowed are cheeses, otherwise it's all about the almond milk. I make him Superfood smoothies packed with greens, honey, hemp, chia seeds, goji powder, maca powder and so on. Essential oils are amazing, we apply them mainly to his feet, some are ingested and there will be another blog post coming that will be devoted to just the magic of these essential oils. Then we've been doing an abundance of supplements such as fish oil, high doses of vitamin C, probiotic, vitamin D, multi-vitamin, manuka honey, turmeric powder, cayenne pepper, apple cider vinegar and fresh ginger to name a few. I owe everyone detailed blog posts on how to incorporate these changes into your life. I'll get there. I wish there would have been a me that I could have read about way back when.

In short, what we've been doing with Calvin's health has to be working. We'll know for certain soon enough. The IgG blood counts have been ordered and will be redone shortly. Then we'll know for sure if we're truly healing him. It is a possibility that we've only succeeded in propping him up on holistic methods but for daily care it's been way better than the western medicine route we have abandoned. The test will tell us if we still have to consider adding IgG replacement therapy to the mix because what if he came into contact with the measles? Would he be able to survive it? It can be a scary thought. As his mom, I have to make sure I'm protecting him. Western Medicine is an old hat and while I find more use out of watching it collect dust than actually wearing it, I can't just get rid of it entirely. On occasion it's needed, it has its place. 

I still love Calvin's Allergist/Pulmonologist, Dr. Paul Detjen. He's a good man and when we checked in with him after six months into our alternative treatments, he was amazed at Calvin's improvement. He didn't merely brush it off as luck or outgrowing something. He told us, "whatever you're doing is clearly working, so keep doing it." This doctor has stuck with us, seen us through some awful spells with Calvin and he gave us the best he knew. I will forever be grateful for him and if we should hit a pothole, and Calvin's lungs implode, you can bet he will be there to fix it. Sick care and emergency care cannot always be avoided. But you can bet your butt, I'm going to steer us away from them as best I can. I am going to enjoy watching the rubbermaid bin packed with his emergency meds, sit there on the shelf untouched.

As I wake up and realize where we are today compared to years past, it seems too good to be true but I'm going to shut up and enjoy it. Even though we have that test coming up, I have hope. Even if we end up needing some medical intervention, it will only supplement what we have going on now. Do some research and educate yourself. There's more out there than an M.D.'s office and their prescription pad. It will take more work and effort on your part, you'll need to be brave and ask questions but I assure you, it will be worth it. We're in a really great place. Two amazing people are to thank for this and I would love to publicly acknowledge them. Calvin was stuck in a state of perpetual sick care and Dr. Derek Kasten jump started his recovery back to a state of health. He supported and coached us through the rocky transition of walking away from what we knew and empowered us to establish a better way that would heal our child. He has now moved on to North Carolina, One Love Chiropractic, and we miss him greatly. If you live there, look him up, he's amazing. Our current chiropractic hero is Dr. Andrea Mursu, Health in Harmony Chiropractic. We love her! You can look her up too but don't fill up her schedule because we need her. 

Today and always I will forever be grateful for these amazing chiropractors, they helped us get our life back. Prior to them, I feel like we were merely surviving. You don't have to just survive, there's living to be done. Happy Thanksgiving to all, may you find gratitude in this life and celebrate those you get to love. 

Friday, February 14, 2014

Poetry for my Little Sweethearts on Valentine's Day

I love Valentine's Day, it's my favorite holiday. The romantic kissy stuff is one reason but mostly, it's because it is full of pink and a special day to tell those you care about just how much you love them. This year, for the little sweethearts in my life, I decided to write each of them a poem. 

For my daughter I wrote:


We love your gorgeous smile, the sound of your giggles and your pretty brown eyes, 
somedays you’re going to feel ugly but you’ll always be beautiful, even your thighs.

Sometimes there is no time for play, so much to do, and no way out of it, 
but we’re here to hug you when you feel like it’s too hard and nothing will fit. 

You’re smart, every bone in your body is creative, and you must have the sweetest heart, 
On occasion you mess up, be confident you are still great and fix it, don’t be a fart.

You have a very special place in our family no one else can fill, only you, 
remember you’re loved a whole lot, no matter what, so don’t ever be blue.

Happy Valentine’s Day wishes and kisses to our girlie girl,
The world is your oyster, don’t you forget you’re the pearl. 

For my son I wrote:


We love your funny stories and the dimples on your cheeks,
we know you struggle to be healthy and some days you feel weak. 

But you’re making good choices and healing every day,
and we are here to help you each step of the way.

When the brains in your head think the anxiety can rule, 
just remember you’re coping skills are the right tool. 

If the HULK in you wants to destroy the world and you get real loud,
we still love you with all our hearts and you make us very proud.

Don’t forget all there is to LOVE in your life when you get blue,
Happy Valentine’s Day sweetheart and many kisses to you! 

They read these poems out loud tonight and I think they liked them. I know they mean something to them now but someday it'll mean much more. I love my children. Our lives get chaotic and crazy, especially now with all of Calvin's treatments, but I won't let it steal the magic. I am not a poet but I had to try. They are each struggling in different ways as we all are. Life gets hard, but today is a special day and with LOVE anything is possible. So, Happy Valentine's Day wishes to everyone, I hope you all felt loved today in some small way. 

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!"