"In the depth of winter I finally learned that there was in me an invincible summer."
Just one week ago I snapped these photos, and with the quick turning winds, we are in the depth of winter. The air holds a bitter chill and on most nights we face single digits. I wondered when we would see our winter, she seemed to take her time arriving. But with the arrival of snow, no matter how low the temperature, there is an instant urge of excitement and newfound joy. We've broken out the sleds, we've waxed up the skis and are ready to take on the season with adventure.
And of course, with any winter activity comes a plethora of hot chocolates, steamers for Jonas (recipe to come soon!) and comfy, cozy clothes. The perfect accessories for a winter season!
These days we're keeping cozy and adventurous with FabKids.
FabKids is JustFab's fashion club, started by a team of parents including mom and actress Christina Applegate. FabKids is a convenient way for busy parents to shop. It's an outfit club -- so parents get monthly selections of super affordable, high-quality fashions personalized for their kids.
As an added bonus, new VIP Members get their first outfit for $9.95!
Thank you FabKids for patterning with us on this post.
I've been thinking about this post for awhile. I originally intended on writing it when we hit our one year mark of our son's Crohn's Disease diagnosis, and we are now slightly over a year. With Crohn's and Colitis Awareness week hitting last month and our follow-up with the GI back in December, I felt it was a good time for a long overdue update.
Since my original post about a year ago on our son's diagnosis I have been a bit vague about his journey. When it comes down to it, it's not really my story to share, it's his. And honestly, I don't know that he wants his personal story plastered all over the internet. But if I didn't open up about his journey then I wouldn't have met the amazing families that I have connected with who are going through similar situations. We are blessed to have friends and family who support us but no one truly understands what you are going through unless they are going through it themselves.
This past year has been a journey, filled with difficult times and times of smooth sailing. I can't even begin to tell you the emotional roller coaster that we have been thrown on- and, I'll be truthful, I don't like roller coasters, especially emotional ones. But here we are, a year later, on a different path than planned but certainly in a better position, at least that's what I think.
Where to begin…
Last March we met with a different doctor at the Cleveland Clinic, per our request, because our original doctor was, well, let's just say not a good fit for us. Don't ever forget you are your child's advocate and as a patient it's your right to find the best doctor fit for your needs! Even if it means going through four doctors. We immediately hit it off with our new Pediatric GI; he was willing to listen to our story and requests, he supported our belief in the SCD diet (to a degree) and encouraged our visits to the Functional Medicine Department. Unlike the other doctors, who read our son's chart and wrote a script for meds, he wanted to investigate. He agreed with us that he was not like most Crohn's patients and that it was time to investigate with further testing. Testing he wanted to do himself, not another doctor. Just by this move he won our respect.
His MRI and scopes he had done in March all came back normal. A bit of a mystery since he still experienced the occasional stomach ache, but certainly good news. Our GI even started to consider recanting the Crohn's Disease diagnosis. We decided to follow-up every three months with blood work and tests and go from there.
Summer was awesome. He finished soccer season strong, in fact, some of his best playing time yet! Even though he loathed it, he made it through a season of swim team and even walked away with several 1st and 2nd place ribbons. Seeing our son relaxed, happy and healthy felt a like a huge weight had been lifted off our shoulders. We started to ease up ourselves. We experimented with foods and added in several illegal SCD and paleo foods; with no reactions. On special occasions we even let him have treats, again with no visual reaction. It was like any ordinary summer; carefree and delightful.
And then school started.
The very first week of school we submitted blood work and other labs, both consistent in showing inflammation in the gut. Then the occasional stomach ache returned and just like that, life became a bit stressful. His MRI in September confirmed inflammation in the small intestines. Results that hit me so hard I honestly think I was left in shock. How could this be happening? He had so many MRI's in the past and not one ever showed abnormalities. He was scheduled for scopes less than two months from his MRI and I immediately took him back to an SCD and anti-inflammatory diet in hopes of bringing any inflammation down in the body. Unfortunately, those scopes only confirmed the inflammation and the diagnosis. The biopsies came back a week later showing granuloma formations, indicative of Crohn's Disease.
So here we were, a year later and finally receiving the official news that we feared; our son, without a doubt, has Crohn's Disease.
Our GI does admit that he is a bit surprised he doesn't exhibit more symptoms, but he also believes food may play a role in keeping those symptoms at bay. He also strongly felt it was time to pursue medicine, something we tried everything in our power to avoid. We're certainly not against modern medicine, but unfortunately the meds used to treat Crohn's and Colitis symptoms are pretty heavy duty. Six weeks ago Jonas started Azathioprine (Imuran), an immunosuppressant used to keep the disease in remission. At this point, our doctor feels that combining Imuran with the SCD diet is the best way to treat the symptoms, get him into remission and start to gain weight.
I'll be honest, I didn't want to start him on it. I did the worst thing possible and read the side effects, both long term and short. But I also know that doing nothing and allowing that inflammation to take over his gut would eventually lead to something far worse.
I still believe in diet, I KNOW that the SCD diet has helped keep his symptoms manageable. For a boy with active inflammation I am amazed to see him hit the soccer fields every week and weekend and play his heart out. Yet, I can't paint the perfect picture. There are times when he misses practice and there are times when he missed opportunities to play up in a higher division. Having to turn down opportunities because of this awful disease breaks my heart. It breaks my heart that he has to work harder, train harder, think harder just to prove himself. It breaks my heart that he is at a disadvantage and even though he is only ten, he knows it.
I like to think these struggles and battles are preparing him for what's ahead in life. I know that his life won't always be smooth sailing and I won't always be there by his side telling his what to eat and what not to eat. I only hope that my hardwork and dedication now will pay off in the long run.
I wish that we had control over this disease, but we are powerless. We are victims. But just because we are powerless and victims certainly doesn't give us the right to act like that. Every day I tell my son that God made him unique and that He has a plan. He would never give Jonas this disease if He knew he couldn't handle it. Every day I remind my son that God must think he is very strong. I know that he is filled with strength.
So, this is where we are.
We made it through the holidays with no flare-ups or issues. Last year certainly had its challenges. At the time, Jonas was on such a strong dose of Prednisone that he wasn't himself; both physically and mentally. I wouldn't say we were 100% in the clear this Christmas, but pretty darn close.
At this point we monitor blood work every two weeks until March. I'll be honest, I hate that my son has to get blood work drawn so often, but we want to play it safe with the medicine and make sure his liver is handling it. I hate that I even have to type this or think about this, but it's our reality. But, on a positive note, the last time he had his blood drawn, which was two weeks ago, the labs were good and within normal range. To our understanding, the medicine doesn't start working until around 6-8 weeks, so I like to think the good labs are a result of the clean eating and the SCD diet. The doctor agreed partially, but I'm sold.
"The doctor of the future will give no medicine, but will instruct his patient in the care of the human frame, in diet and in the cause and prevention of disease."
I hope and pray that our son's future doesn't involve medicine, but the harsh reality is that he may be on medicine for the rest of his life. We're taking it a day at a time, a meal at a time. And for now, diet continues to play a huge role in our life.
"Write it on your heart that every day is the best day in the year."
Ralph Waldo Emerson
This year we decided to end the hectic holiday season with the perfect getaway; a family ski trip to upstate New York! Even though we didn't get as much snow as we had hoped and the skiing conditions weren't perfect, we still enjoyed some much needed family time away.
And honestly, it was exactly what we did need. Jon was actually able to relax, Jonas was healthy and in great spirits and Jess rocked it on the slopes this year. And Josh? Well, Josh is Josh, the most laid back kid around. We did one round down the bunny hill and that was all the kids needed to bring back the feel of being on skis. Every year I'm amazing by how quickly kids advance in such challenging sports.
And so here we are, a new year upon us.
2015 was a great year, but I eagerly welcome 2016. We have lots of great plans ahead including a trip to Mexico, a house renovation and a summer vacation. I'm not one for making traditional resolutions, but here are a few thoughts that are on my mind for 2016:
- travel more
- spend less
- practice minimalism
- recycle as much as possible
- assign chores
- read good literature
- take more photographs
- slow down
- increase my running mileage
- embrace friendships
- live each day
- watch a sunrise
- drink less coffee
- write daily
What about you? Do you make New Years resolutions? Any goals for the new year?
*This photo was from Christmas dinner; the kid's happily toasted sparkling juice to a night filled with family and fun.