Adventures in the Great Outdoors, I

If you took the way that my husband (The Man Of The House, or TMOTH) and I grew up and compared them, you would see the reason why the two of us are vastly different. Unless we were at my grandparents’ farm, we didn’t do much outdoorsy stuff–camping, hiking, fishing, etc. My husband? was outside ALL THE TIME.

Ironically, my husband and I met on a camping trip–the weekend was the first time I’d ever stayed overnight in a tent.

While I’m still not an “outdoorsy” girl–I’d still rather be at home with my books and laptop–I’ve been getting better about being outside. Or at least I’m trying to be.

Frequently on the weekends, my husband says for me to pack a cooler and grab some diapers for our three-year-old, and off we go. Sometimes I grumble, if not to him, to myself. I’m not a spontaneous person, I like to have some time to plan things when possible. An hour to pack everything we’ll need for the rest of the day and it’s 11 AM? Yeah, doesn’t thrill me too much.

But, I like what it’s teaching my kids–to be flexible, roll with the punches, and most importantly, enjoy the outdoors (although, much of the time, all they’re enjoying at this age are movies in the car and an excessively long car ride.)

Father’s Day was one of these days. On the way to church, TMOTH made noises that he wanted to go fishing. So, I had about a two hour warning before we got home that this was on the plate. Get home, pack lunch, grab the diapers, head out. 

Then, what inevitably happens with us, “Where are we going?”

“I don’t know. You tell me.”

“It’s Father’s Day. You pick.”

“I don’t know where to go!”

A bluegill our daughter caught on Father’s Day

I sigh, make a few half-hearted suggestions. We stop and he retrieves the Gazeteer from the trunk. I start telling him directions. The kids watch “How to Train Your Dragon” for the 17th time in the last few weeks. The younger one naps. The dog is cramped, on the floor between the front and back seats of our mid-sized sedan.

We’re all wishing we had a Suburban, especially the dog.

Eventually, we find a spot we’ve been to before, a long, long time ago–maybe before the kids came around. TMOTH and our daughter fish.

Our daughter catches two small bluegill, TMOTH catches a small catfish and a small bluegill.

I keep our son from falling into the water, take pictures of dragonflies when I can get close enough to them without our son getting too close and scaring them off. We huddle down together after retrieving our hats from the car as light showers come across the lake and hit us head on. By the time we leave, my T-shirt is soaked from the rain.

I’m cold, haven’t had dinner, and am tired, but other than gently reminding my husband he neglected to get me something to eat when I couldn’t eat at Subway (I started a gluten-free diet last fall, so Subway is NOT on my menu,) I don’t say too much. I do adjust the thermostat in the car to something a little warmer, then help my husband figure out where the heck to go. We take a wrong turn or two (I’ve gotten turned around on where we are,) and I mark the Gazeteer in ink on where to go again, and scratch off roads shown on the map that aren’t roads.

It’s been a successful day overall. We made it home in one piece. The kids got to run around and fish. I took several pictures, none I’m thrilled with, but they’re okay. And more importantly, my husband got me out of the house. I’ve become quite a homebody the last couple years. Having your life center around the health and wellness of your immune-compromised son will do that to you.

Next up on our list of challenges–a possible weekend trip to a cabin, or maybe even in a tent.

I’m not sure I’m ready yet.

Until next time…

What *Is* That?

As I said in my last post, I was toying with doing an update on my son’s health for this post.

Because of the rareness of his condition, I’ve thought about it and decided to share.

Chances of a child getting SDS from carrier parents

While my husband and I are still awaiting genetic confirmation, it is believed my son has an autosomal disorder called Schwachman-Diamond Syndrome. While related to cystic fibrosis, it’s not the same. Schwachman-Diamond Syndrome (or SDS) mainly affects the pancreas, bone marrow, and skeleton. While we’re not sure about our little guy’s marrow, we know it’s affecting the pancreas and skeleton.

In a normal person, the pancreas excretes enzymes to help process foods. In an SDS person, the enzymes necessary to process fat (at least in our case) aren’t present. These must be supplemented, which we’ve been doing for approximately a month. This is apparently part of the reason our son hasn’t been putting on weight, and at 8 1/2 months old, has just barely doubled his birth weight (something that normally happens by the 4th month.) If you can’t process half of what’s in breastmilk, you can’t grow. :/

As for his skeleton, we know that our son’s ribcage is misshapen. I haven’t had it fully explained to me, but there are other markers in his skeletal x-rays that are consistent with a percentage of SDS cases.

SDS is extremely rare. Our doctors say it occurs in about 1 in 75,000 people, which puts the numbers in America in the 4,000 – 4,500 range. One of my son’s doctors has about five patients in our metro area (around 2 million people.)

More information about SDS can be found at the SDS Foundation website and Wikipedia.

So, what’s this mean for us right now? Well, our little guy is getting intensive treatment from his doctors. He’s seeing three specialists and we fully expect to get at least one more in the next month or so. Medications are being added to his regimen on a regular basis. And, after being on a feeding tube since Christmas, we had one doctor tell us he wants X-man (our son’s nickname) off the tube. After thinking about this, I can see the reasoning. It wasn’t necessarily that X-man wasn’t getting sufficient amounts of food, it was the fact he couldn’t process up to 1/2 of what he was receiving!

Obviously, this isn’t going to be a walk in the park. He’s at a higher risk for severe infections (like when he landed in the hospital in February with pneumonia,) leukemia, type-1 diabetes, and the need for a bone marrow transplant in the future. Whatever comes, though, I know I have support from our friends, family, and church, as well as a spring of strength from God.

Until next time,