Thursday, September 21, 2006

This Living Shouldn't be Called Living, 'Cause it's Really Only Half a Life

Going to Michigan gave us a massive wake up call big swift kick in the ass, making us realize that we've been living in an illusion that Darwin is getting better.

The simple fact is, he's not. He's just getting worse.

Darwin has had health problems since he was in utero. To keep from miscarrying him, I had to take a concoction of hormones; I spent every morning of the entire pregnancy leaning over the kitchen sink and coughing up blood. At 31 weeks, I went into premature labor and was admitted in the hospital. I was released with some scary drugs in my pocket and strict bedrest orders.

When I was induced to deliver him at 39 weeks, his blood pressure stopped. When he was born his apgar score was a miraculous 9.5 despite finding out that his umbilical cord was not properly attached to the placenta (I only found out a few months ago that having a live birth vaginally with that defect is considered a "miracle"). Within two hours of coming into this world, he was admitted into the NICU and we were told he may not make it through the night.

Darwin spent nine days in the NICU and the doctors couldn't figure out what was wrong with him, nor how it seemed to "fix itself" with time and oxygen.

By the time Darwin was six weeks old, we were fighting with doctors to get him tested for allergies -- he was broken out in a rash from head to toe and very sickly.

At five months, Darwin was admitted into the local children's hospital for the croup. Again, we (or, rather I, as Aaron was out of town) were told he may not make it. Being admitted into the hospital was enough to finally get our foot in the door with allergists and dermatologists.

At six months, Darwin had a basic allergy panel ran. He came up allergic to everything -- cats, dogs, dairy, soy, wheat, corn, peanuts -- 13 things in all. He was started on Zyrtec.

We found our cats new homes. We had the carpets, furniture, blinds and ducts cleaned twice. We got Darwin started on Neocate formula.

We took him to a dermatologist and got him started on Elidel. Within two weeks he developed an allergy. To get him over that he had to take steroids. Then he was started on Protopic.

At 14 months, we sat down with our allergist and outlined all the foods we wanted him tested for -- over 250. He came back allergic to Every Single One.

Food allergies are on a scale from one to six. Six being over 100 parts per 100 and considered vary rare. Darwin is allergic to seven foods on the level six. In order to feed him anything, we have to feed him food that he is allergic to on the level three or lower.

Then, at 15 months old, Darwin had his horrible eye accident and spent five days in the children's hospital again. He was administered enormous amounts of steroids in order to try to save his optical nerve (which is now dead) and third cyatic nerve (which died, but regenerated -- which is why Darwin now how functional movement over his eyelid and eye globe).

A doctor in the hospital asked to run some tests and we whole-heartedly agreed. He found that Darwin had a dangerously low Zinc level and now takes a Zinc suspension every morning.

Over the course of the past year, we have had second and third opinions from allergists and dermatologists. We've tried many creams, ointments and suspensions. If Darwin isn't immediately allergic to them, he develops an allergy in a matter of days.

This is considered "healthy and lookin' good" for Darwin...

... in all reality, that looks neither healthy nor good.

It's time to try something new. We've done everything we can think of. It's time to take a new path.

Alternative medicine has been a blessing for me. I have an alternative doctor that I see regularly in addition to my slew of mainstream doctors. We've taken Darwin to see him once and get some input, but due to Darwin's young age he hasn't ran any tests.

I have an appointment for Darwin to see my doctor on Monday. In a previous visit, he has mentioned a clinic in Chicago we should take him to. I'm going to get information on it. I'm also going to insist that he do any blood work he may deem necessary.

I'm also taking Darwin to see my chiropractor tomorrow to see if his spine is in proper alignment.

There has to be something, something, more we can do that hasn't been done. And I'm going to exhausted every goddamn motherfucking one I can.

Because this is ridiculous.


Alicia A. said...

Oh, sweetheart. I know how much you've been through with Darwin. He really deserves a break. Poor wee thing. I hope this new approach can help.

Even with it all he is a real trooper. He's such a happy little thing! Hang in there, Mommy and Darwin. Surely something will give soon.

Apron Thrift Girl said...

I'm a very strong believer in alternative health. I'm also a believer in a good dose of motrin when I have a killer headache. I think they both compliment each other when needed. I think it is needed to research every avenue out there. Are you in any allergy support groups on-line or locally? Sometimes it helps just to see how others are coping even if it is with gin and tonic. My allergy to gluten has sometimes just plain really messed up my life so I can relate on just a miniscure level of what you are going through. Hugs to you and Darwin. Let me know if there is anything I can do at all to help.

PamKittyMorning said...

I hope you find some help with this. Because that poor little foot.. well not like you don't know that. What a trouper he is too, that smile.. heartbreaker. Good luck.

Ali said...

I am in awe of your strength and the spirit and sheer will of your little boy. Hope the alternative route gets you somewhere - I'm a one time skeptic totally converted to the power of complimentary therapies.

lera said...

I'm fighting back the tears. For you and for Darwin.

Poor little guy. I've known of his multiple problems, but to read it again in one setting is heartbreaking!

And for you! Every mother wants a healthy, perfect child. While I know he is perfect, he has so many challenges. And those challenges become challenges for YOU!

I know we've joked before that I couldn't handle all your family's medical problems, and you couldn't handle 6 kids, but -- my, oh my -- honestly, how do you do it?!?!?!?

Dawn said...

Ah that wee foot just breaks my heart in two. I really hope that the alternative route helps Darwin because you're right there has to be something... big hugs!

Emy said...

Wow, I can't even imagine that. I always thought that I had such a horrible delivery and pregnancy, but mine was nothing compared to yours.

I really hope that you find something that helps him. :)

Ps. I'm sure he's allergic to this as well, but if its not too bad of an allergy, maybe try rubbing his skin with olive oil? Italians swear by it.

amy h said...

I hope the alternative doctor tries whatever he can. I say, if something works, go for it, even if you don't know *why* it works. I've had this debate with my skeptic husband before.

It must be so hard to watch your child go through things like this. You have my admiration!

laeroport said...

It is unbelievable what little D. has been through. I hope that Dr.AltMed. can provide some good information to get Darwin on the path to a less challenging life. I'm keeping my fingers (and toes) crossed.

monica said...

you go girl. He's such a lucky boy to have a mum like you who will never ever give up on him.

And we're all behind you. I know of friends with children with terrible/horrible/bleeding painful eczma who were really helped by cranial ostheopathy (can't spell it right), and kinesiology (something to do with food allergy). Anyway, I hope that you'll find something that helps very very soon.

Angela said...

Wow Capello. This is hard stuff. I feel for you guys. You are one strong lady and you WILL find something to make his life better/easier/less painful. I'm all for alternative med.s He's been through so much, as have you, it just isn't right. ;-( I wish there was something I could do to help you both. If there ever is, please let me know. I really hope you get some solutions soon! hugs and big sloppy kisses.

kristi said...

Poor Darwin, and poor you. I wish there was a magic switch the doctor could flip to straighten out his immune system! I hope you find some answers soon, from the new doctor or someone else. Hang in there...

Kristy said...

I'm mid allergy flare up at the minute, once one is set off I seem to become hypersensitive to others, but no where near to the same level as Darwin.Poor little fella it's must be heartbreaking for you.Just know that you are doing as much as you can and he's obviously with the right Mum!Sorry no advice as I think your are the expert anyway.

Amy said...

I can barely read your blog lately cause I'm so stressed and sad for you so obviously I cannot imagine how you really feel, having to deal with this in real life, with your own precious little boy. You should just know that you are are made of stronger stuff than most and therefore, so is he, in his own way. You'll both find a way to pull through!

Leah said...

I coudn't just read and go. You're doing such a great job in looking after your family. I'm thinking of you all.

kirsty said...

The best thing any kid can have is a parent who will fight for them. Go, Laura! My best friends daughter looked like that on a good day, too, until an alternative practitioner got it sorted out (she, however, isn't allergic to as many things as Darwin). It's changed their lives - her entire personality is different now she's not itching and sore.
Look, it may sound Pollyanna-ish, but I am completely convinced that life never throws us a ball (no matter how curved!) that we can't catch. You, Capello, have a backbone of iron. You will succeed, I'm sure of it.

LLA said...

Oh, honey - bless your heart (and Darwin's too...)

It does seem as if YoungDarwin has gotten more than his fair share of rough breaks in his short life. However, he's got one great thing working in his favor: his mom. Your strength, your sense of humor, and your sheer force of will is going to get him through all this.

And you might need a shoulder to lean/cry on as you do get him through all this. Remember that I'm here, OK?


marshamlow said...

I am so sorry Laura. I am keeping you in my prayers. I know that you will eventually find a solution.

diana said...

There is no energy like a mom on a mission... and I know you will explore every single avenue for this babe.... I am in admiration for your zest, your love and your ability to be so brutally honest, yet always find a glimpse of humor. You are a good mommy... in fact you go way above and beyond what the rest of us have to do... Laura, I wish you would get a break and I wish Darwin would too. I have tears as I type this and I have never met you... but I feel your strength and your angst. Blessings and hugs to you and those sweet boys. I am so proud to be your bloggy friend.

Soo said...

It's amazing how much love comes out from what I've just read. Darwin is a lucky boy to have a mum like you who doesn't give up. I'm sure the alternative route will be a good one, good luck!

jojo* said...

Oh Laura. I had no idea it was this bad. I knew he had allergies, but your poor babe is really having a hard time. He's so fortunate that he has you going to bat for him! Hugs to you and your sweet little guy!

lindiepindie said...

Wow - so much for him to have gone through in his short little life. And a lot for you to go through in your short time with him up to the present! I'm sorry this has been such a hard journey for you both.

I love my chiropractor. I'm sure that his visits will help. Isn't it funny how chiropractors find things that other doctors miss, then when you tell your doctor, he rolls his eyes?

estea said...

oh babe this sucks and it just makes me mad that he must suffer so.

but he is SO VERY BLESSED to have you as his mama. you guys will figure this out. you will. explore everything.

mwah to the little man from me.

Cathy said...

Darwin really is a miracle! And you are a miraculous mother... most parents would have been defeated but you are strong and you are going to get him through this. It is so hard to make doctors understand that waiting doesn't work for every baby... I hate that they don't listen to parents. Put your foot down and make them listen! I'm sending you lots of positive energy!

Mirre said...

I had no idea how sick Darwin really was :(((
It must be torture to see your child suffer like that... all the more credit to you all!
Good luck with the new path!

Catherine said...

I can so empathize with your situation! {{hugs}} My Joshua was also allergic to everything, we had to feed him his least allergic foods. We tried everything - mainstream drs, alternative & even some really out there types.
I am so grateful that he survived. He is now 18y old, and out looking for a job thru a gov't program that is taking his allergies seriously and helping him move out into the world.
It's been a long haul for both of us - but we made it.
I know with your strength & persaverence, you & Darwin will make it too!
If you want to read Josh's story, it's here:
Joshua's Story: The Child That Could Not Eat.