Ok, since I haven’t blogged in a few months… here’s a quick recap of what’s been going on. What we’ve done, what we’ve learned, etc.

August: Trauma/Drama of the month: Dallin (our then 2 year old) “broke his leg good”- according to the E.R. doctor- in a freak slide accident.
What we learned: ALWAYS call Dr. Weinstein. I thought, “Hey, it’s a broken bone. What does that have to do with a liver disease. I don’t want to bother such a busy man.” WRONG! Fast forward two weeks after the accident, the orthopedic surgeon who had calmly reassured me that he was so young that he’d heal really quickly, is looking at the new x-rays a little dumbfounded and again promising that he’ll heal quickly, just not as quickly as he had expected. “The bones don’t look any more brittle than any other 2 year old’s”. He again reassured me, and told me that there was no need to “freak out” or call Dr. Weinstein. So, I e-mailed our GSD specialist extraordinaire instead- asking if we should up his calcium supplement. A few minutes later he responded and asked if we were getting him enough Vitamin D (800 IU a day) since we live so far north.
He also told me that high lactates will impair healing, so it was very important to maximize control (ie test blood sugars more frequently, and make sure he’s eating all of his scheduled meals/ snacks). Also, pain will also cause lactates to go up! (my exclamation point and bold letters- not his). I had no idea! I hadn’t been giving him too much medication to control the pain because he was acting OK, and I try to avoid meds that may cause liver damage as much as possible. Bad Mom moment.
But in my defense, the kid has an amazing pain tolerance. The E.R. Doctor wouldn’t see him at first because two little 2 year old boys came in with possible broken appendages at the same time. Dallin was sniffling, and only I could tell was in a decent amount of pain, whereas the other little boy was demonstrating his enormous lung capacity at an earsplitting pitch. So, they had us wait for a while while they treated the other boy. His arm had a hairline fracture. When they finally got around to x-raying Dallin (they weren’t entirely convinced that it was necessary) it showed a spiral fracture as well as a stress fracture.
Anyway, I followed Dr. Weinstein’s advice and maximized pain and b/g control. He healed at a faster rate, but still slower than anticipated. Again, they promised there was no way that he would still have a cast in October.

Oh, and we took the boys camping. In a tent. Broken leg and all. We are brave.  Mark caught a fish, Ethan got to roast a beloved hot dog over a fire pit, Jonny got to hold a frog, and Dallin wacked us with his  full leg cast in the middle of the night as Ben and I tried to give 2 am cornstarch in the 5 man tent all 6 of us were sleeping in.  Good times.

So far this season we’ve dealt with two good size episodes of different sicknesses. The first being a mean cold that took each one of us down one by one presented the first challenge and the feeding pump rotating from kid to kid. Then as to go out with a bang the nasty germ settled in on my wife and I so that we had to take care of the kids(who were now running around and healthy) in a pitifully sickened state. This time is always a great taste of patience endurance and humility. Unfortunately, I seem to fail on all three at some point or the other.

The second bout was some type of stomach bug that hit us following the same pattern as the first, by hitting each kid individually then finishing off with the parents. This one was particularly nasty; having us deal with countless vomit and poop messes. The Glycogen Storage Disease side of things unfortunatly requires that at home we keep funneling an ample supply of formula / ammunition for the germ to launch at will and the poop messes are less than to be desired, but by the grace of God we have been able to keep blood sugars stable and all the kids out of the hospital.

As a special treat this year, Ethan needed to go in for eye surgery smack dab in the middle of dealing with both sickness challenges. We were pleased however, that things went well and the doctor and hospital did a stellar job on keeping Ethan’s blood sugars up. A bit of a break afterwards would have been nice though. It seemed that as soon as he got home Mark’s stomach bug started to churn.

This all of course takes a toll on church, school, therapy and family activities, and wears us out more than we previously thought was possible.

So, I don’t wish to sound too down hearted about the holiday season. Our kids are eagerly anticipating Christmas and had a blast at Thanksgiving and eating mom’s special GSD friendly pumpkin pie. There are plenty of good things going on to balance out the bad.

Having such a large support of people has been the one thing that has kept us going. Family, friends from church, and home health aids have shown up at the right time to help cheer up a kid, or take a healthy one with them for a little while to have a chance to get out of the house and give my wife and I some chance at respite.

The most humbling of all is that we seem to find ourselves contributing to this season of giving by simply offering plenty of opportunity for others to give. So this year in our quest to keep kids healthy we’ll also be seeing what ways we can help our kids help others. Wish us luck.

Also, the public pre-school that attends has been difficult lately. They simply do not understand the gravity of this disease, and the school nurse and psycologist were actually pushing to have our barely 5 year old weaned off his g-tube by the end of the year, and “Why don’t you have him in therapy so he can learn how to eat?” He can eat. We only use the tube for continuous feeds when necessary and cornstarch every four hours. I’ve been repeating this for 6 months, you’d think they would get it by now. Sorry if I sound bitter, but it’s hard enough dealing with just glycogen storage disease, trying to coordinate all of his special services when teachers and principals automatically assume I have no idea what I’m talking about can be even more exhausting- especailly considering I trust them with my son’s life everytime I put him on the bus.