Sunday, August 29, 2010

Moving Forward, Looking Back (and Clinic!)

I've been a terrible blogger. I freely (but shamefully) admit that. It seems strange that life has slowed so much in the past few weeks and yet I've had LESS time to write than I did when we were in the thick of the 2010 Apocalypse. New baby, new diagnosis, new places to live, new jobs...
reunion5

Things finally slowed down and we aren't running on pure adrenaline. A routine is emerging from the chaos, school is in session, the weeks are rolling in and out like the tides. I suddenly find myself looking around and saying "what now?" Coming down off of a months-long adrenaline binge made me restless. I also began to feel...maybe a wee bit depressed? When Jackson was diagnosed the public outpouring was simply astounding. Astonishing. Amazing. You name it, I was constantly overwhelmed with grace and gratitude and it bubbled over and spilled all around me. I found it relatively easy to be positive even when I was sad. When the adrenaline began to wane, I feared the loss of my new enthusiasm. Suddenly every moment wasn't larger than life and I didn't know quite what to do with it.
reunion4

It was a case of early onset apathy. The sure cure? A trip to the CF clinic. A trip to a children's hospital, as I've said before, encapsulates the best and the worst of life's experiences. It takes very little time in the waiting room for a body to realize just how lucky they are, and today was no exception. It's also a brief trip down memory lane, to the time only five months ago, when we met my Mother in law in the waiting room, and I explained how there must have been a mistake with the screening. A glance at the tubby little man in the car seat at my feet send tears bubbling up and trips the 'grateful and gracious' trigger all over again. It's impossible to believe I could be so accustomed to this extraordinary life.
Reunion1


My first indication of the caliber of this clinic visit came as soon as we weighed in. J was met with a chorus from the nurses, "we don't even recognize that baby, remember when he first came in how skinny he was?" "he sure doesn't look like a CF baby!". And sure enough, the scale doesn't lie. The anticipation for the little red lights to give up a number was unbearable, although J handled it by eating his feet. When they finally flickered their verdict, I was ready with my kilograms to ounces converter. Eighteen pounds, five and one half ounces. Then length...twenty eight inches!! His weight has maintained at the 65-70th percentile, and his height had rocketed up to the 95th. I want to turn his growth charts into a diamond studded platinum charm and wear it around my neck for the whole world to see.

The rest of the visit was about on par with the first part. 98% o2 SATS, crystal clear breath sounds, NO NEW MEDS, but a spankin' new nebulizer that works in half the time of Em's old clunker hand me down... We are increasiing his salt intake since he is such a sweaty little dude. He's been leaving salt rings on his crib sheets, and a blood draw confirmed that his sodium levels were just a tad on the low side, so we're doubling up for a while, at least until the weather cools down and sweating is less of an issue. We discussed whether it would behoove us to switch to an ultrasonic nebulizer, but since Albuterol and Pulmozyme are currently our only inhaled meds, we opted for an updated pneumatic for the time being. Thanks to Fatboy for a load of useful information on the topic! There's really nothing more I could ask from a clinic visit. It certainly put the shine back on things.

Photos in this post are from a family reunion last month. Shame on me for not sharing them sooner!



Next post: 6 Months of Very Merry Milestones

Wednesday, August 11, 2010

Cystic Fibrosis Does Not Belong to Me

This poor blog has been sitting for a week and a half waiting for me to add photos to it. Seeing as it going to take me a couple more days to get through the ones I have, I'm throwing this up on the page without them. I'll make it up to you!


As usual, when I've been dwelling on something less that brilliantly positive, I've hesitated to share. I don't want to be dark and heavy. I don't want to spread that junk, no sir, not me. But in the interest demonstrating honestly how we come to terms with things, I know I need to share. And as always, it makes me feel strongly the need to remind everyone that I'm aware just what an extraordinary love I have in this family and this life. I'm not a saddy sadpants.





However, just when I think my bright and shiny, upside-only attitude is firmly entrenched and unbreakable, I get blindsided by something I hadn't realized I'd need to deal with. My usual response to that is to deny it until it decides to put me on my ass for a day or two and face it. And it always seems to sneak out of the most unlikely places.





Last time I blogged I asked for intros and links to others in the CF community. I got a few and also struck out to find more ways to 'meet' others traveling the information superhighway in pursuit of like-minded company. It didn't take long to find the kind of voices I had been looking for. I have found blogs of other mamas, friends and family, spouses. The brightest, most resonant voices, however, are those of a few adult CFers I have come upon. Strong personalities, fabulous attitudes, genuine sentiments, and a willingness to share their lives. Cue the "hallelujah" chorus! Proof positive that my baby can grow up and lead not only a full, but an extraordinary life! Not only that, but these folks have been friendly and welcoming without any of the 'oh, poor dear' that I tend to encounter from the general public. I swelled with a kind of 'these are my people' pride, feeling like I'd made some sort of homecoming.





Slowly, up from the depths, quietly, stealthily, the realization tunneled its way from my subconscious...they're not 'my' people. I mean, the community. yes. the families, yes, all the wonderful people...yes. But not 'mine'. Jackson's. Cystic Fibrosis isn't my disease. It's Jackson's. I'm not the one with a degenerative disease. My chubby little smiling, giggling, jumperoo maniac of a sweet salty baby is. His meds routine won't be my burden for the rest of my life, it will be his. The physical pain won't be mine, it is his. Cystic Fibrosis does not belong to me, it belongs to my son. That's the knocked me on my ass part. After pushing it back and trying to strangle it for a few days, it got the better of me and I vented to a few close friends and let myself break down a bit. When I was no longer denying the feelings they had much less control over me, and I realized I had something valuable to take away from the epiphany.





CF isn't my disease. It's my cause, but it's not my disease. I'll never be the one living with it the way my son will, and as much as I wish I could take the suffering for him, I can't. It's a part of his life that right now I know better than he does, every cough, every poop, every medication, and every thump of his chest percussor is under my control. As he gets older, I won't be able to exercise control over any of those things, and will lose the feeling that I have any control over the disease. While that seems like a terrifying prospect, it serves to remind me how little control we really have over anything in life. We don't control our genes, who we're born to, where we start out in life. The only control we really have is how we choose to react to things. We can't control the rain, but we can choose to carry an umbrella when the clouds roll in.





It's good for me to have had this realization. I shouldn't start out on this journey thinking I can control the path we're on. I need to remember that while it's my point of view, ultimately this isn't a firsthand experience, it's me talking about my role in my family, my son's life, and ultimately his fight against CF. It's not all about me, and eventually I'll have to learn my place in his fight. I think we all need to be reminded of that sometimes. It's unbelievably hard to realize I'll be an armchair quarterback in my sons fight against CF when all is said and done.





If you want to check out my newfound 'inspirational voices, checkout CFFatBoy, RunSickboyRun, A Matter of Life and Breath, cfstinabug, and CysticGal. There are several others I'd like to list right off the bat also, but I don't want to overwhelm you! My world and my heart have grown by leaps and bounds in the short time I've been following these people (and others)

now, to get my butt in gear and tend to this neglected blog and my lonelyflickr account.

Thursday, August 5, 2010

Improving Access to Clinical Trials

Note:
This isn't my standard blog material, but it is INCREDIBLY IMPORTANT.

S. 1674 is a bill designed to help improve access to clinical trials for rare diseases. (Much as the title suggests)


Who, What, Why, in layman's terms:

Clinical trials establish the safety and effectiveness of new treatments so that they can gain FDA approval and then be distributed to patients who need them. When a disease is rare, the trials automatically start with a smaller quantity of patients able to participate. Finding patients who are willing and healthy enough to participate in these trials becomes a challenge.

When a patient participates in a clinical trial, they may have to miss work, travel, or do other things that cost them money. The trials pay a small fee to participants to help them recoup some of these losses.

Many, if not most patients with rare diseases need assistance funding their (very, very costly) ongoing medical care. Programs like Medicaid can be a lifesaver to these patients and their families. Medications for these patients can cost tens of thousands of dollars a MONTH. In our case, Jackson has some medications that would cost about $400 a month, and one that would run us $2000 a month out of pocket. That's just TWO of the meds he needs. The private insurance available to us would cost over 1/3 of our annual income before it would cover ANY of our expenses. Having Medicaid means we don't have to choose between paying rent and getting Jackson his medications.

So what's the problem? There are rules and limitations to qualify for Medicaid. There are income guidelines you have to meet in order to get assistance. As it stands now, money gained from participating in Clinical Trials is considered supplemental income. Patients are being disqualified for Medicaid because of the fees paid by Clinical Trials. Of course, when the ultimatum between medical coverage and ability to participate is presented, Clinical Trials suffer greatly, and the field of potential participants is narrowed even more.

In order to advance research, treatments, management, and cures for these diseases, Clinical Trials must be available to the greatest possible number of participants!

S 1674 wants to exempt income (the first $2000 per year) gained from participating in trials from being counted towards income guidelines for Medicaid. This will increase the number of patients able to participate in clinical trials, making them more effective, and hastening the advancement of treatments and disease management.


Help get S 1674 passed. You can start by writing your state representative to ask them to sponsor the bill. IF you don't know who your representatives are, finding out is as easy as clicking HERE . The site also has contact information for all your current officials.

What to do:

You can use this letter to ask your representatives to sponsor the bill. Just a copy/paste email will work, or you can include your personal story or connection to rare diseases and the need for greater access to Clinical Trials. You can forward it to friends and family and ask them to do the same. The more requests they get from their constituents, the more likely they are to sponsor the bill.

You can track the progress of S 1674 HERE . You can see if your Reps have co-sponsored or if you still need to raise awareness in your area.

You can organize visits to your representatives in person to lobby for S 1674.

You can link or copy this blog to any site you'd like to help spread the word. We need all the help we can get. (Also, should you spot any missing or incomplete information here, please let me know so that I can give the most accurate info possible!)

You can reach me here, by email at amywynn@live.com, or on Twitter as @FindingThetis . Thank you for crusading with us!

Tuesday, August 3, 2010

Into the Fold

I have a little request. Any readers here from the CF community, I could use your help getting into the fold a bit. Can you help link me up? Blogger, Twitter-ers, parents, spouses, siblings and other CFers? Or anyone of possible interest who doesn't fall into those categories??