Trauma/Drama/Excitement: We went on our first family vacation with all four of our boys.

Prep work: I made sure to pack for every conceivable medical emergency. Along with our “normal” medical supplies we accessorized with a feeding pump and bags, extra gastrostomy tubes (not just the extensions), dextrose, etc. Plus, I mapquested our route to/from the airport, as well as the closest hospital with decent online reviews- since I will never entirely trust Naggie Maggie GPS ever again! Oh, and of course the closest In-n-out Burgers. Mmmmmmmm. I think I’m drooling thinking about it. You eastern folks have no idea what you’re missing.

Wednesday: Flight from Boise to San Diego

What we learned:

Southwest Airlines doesn’t charge for your first two checked bags, or medical bags, and they’re VERY kid friendly. Loved them.

It took 15 minutes to test our liquid Prosobe, but the airport screeners didn’t even blink at our 15 pounds of white powdered substance in individually marked by gram ziploc baggies, or our gram scale. I also caught some slack from the screener for bringing an “excessive” amount of liquid on board for such a short flight. I had enough to make it through the day, as well as one extra unopened can in case someone got airsick. She also implied that a good mother would have her kid off infant formula when he’s 2 years old. I tried to explain, but she really didn’t care. Someday, I might forgive her- I’m sure she’s already forgotten me.

Screening is also MUCH easier when you have a 1-on-1 ratio of adults to GSD kids. It was nice traveling with family.

Where to stay: My parents rented a large, beautiful house for all of our family to stay in.

What we learned: Having a kitchen to prepare and store food made the GSD dietary restrictions and schedule much easier (and cheaper) than trying to eat out for every meal like we would at a hotel. I’m a fan.

Thursday: San Diego Zoo- Fun! Fun! Fun! The boys loved the animals, especially the polar bears and oddly enough otters.

What we learned: October is “kids get in free” month, AND anyone with a “disability” is allowed one person to accompany them for free. I had a fabulous note from Dr. Weinstein, but all I really had to say was “life-threatening disease” and bada-bing bada-boom, we were all in for free.

Monkey leash backpacks are the best invention since bolus feeds.

Bring your own food, and test blood sugar frequently. The boys’ blood sugars dipped a bit from all of the exercise, excitement and fun in the sun.

The San Diego Zoo does not use plastic spoons. Their spoons are made out of cornstarch. I wanted one for a souvenier, but we didn’t get around to it.

Rehearsal Dinner: Skip forward a couple of hours and we’re showered and at the Rehearsal dinner. It was an absolutely beautiful site, but the kids were pretty tuckered out and rather crabby, and let’s face it, Ben and I were up with 2am cornstarch too, so we weren’t exactly chipper either. Given the circumstances, they were very well behaved. I will forever be thankful to my husband who walked the kids around (and got some fabulous photos of the them) so I could be with family I don’t often see. Seriously, he’s amazing.

The dinner itself was a little tricky to get to in downtown San Diego, but the food and company were great! It was about 11:00 our time when we got back to the rental house, exhausted. By the time we got all of the kids in bed, all of the med supplies unpacked and cleaned, more formula mixed up, and all of our nighttime cornstarch layed out it was closer to 1:00. We decided to just stay up and watch something on Hulu until 2:00 starch.

What we learned: Never leave your medical bag in a room that is possible to be locked up before you leave. I’m getting pretty good at mixing/ administering cornstarch in the car. And, it’s easier to stay up until 2:00 cornstarch, than it is to wake-up for it.

Friday: We did another ½ day at the zoo, and then took on the beach for a couple of hours- after yet another stop at In-n-Out. Ahhhh.

What we learned: Ethan is a beach-aholic! It was nearly impossible to get him out of the waves, even though it was cold and rainy. Dallin dislikes the beach almost as much as his mother. We stood on the shore in a couple of jackets shivering and in charge of frequent blood sugar checks, snacks and towels. Kudos to Ben for sticking it out in that water with three boys for as long as he did.

Friday night: We had a very fun “out of town guests” Hawaiian party hosted by my brother and his bride. Fabulous food, balloons, a wii, and even a bounce house. It was a great time to mingle with all of the out of town family that came to celebrate. We even had a chance to show off a g-tube so someone could compare it to their mother’s g-tube.  

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.

2 cups pastry flour
1/2 cup almond meal
2 teaspoons baking powder
1/8 teaspoon sea salt
1 teaspoon ground cinnamon
1/4 teaspoon allspice
1/8 teaspoon ground cloves
1 teaspoon pure vanilla extract
1 teaspoon maple flavor (Frontier brand)
1/2 cup canola oil
1/2 cup Suzanne’s Specialties Original Brown Rice Syrup
1 cup canned pumpkin (Libby’s 100% Pure Pumpkin)
1/2 cup Eden Rice & Soy Blend

Preheat oven to 350 degrees. Spray muffin cups with no-stick cooking spray (Pam For Baking with Flour)

In a bowl, whisk together flour, almond meal, baking powder, salt, cinnamon, allspice and cloves. In second bowl, whisk together pumpkin, vanilla, maple flavoring, oil and rice syrup. Pour the pumpkin mixture into first bowl with dry ingredients. Mix together, then slowly add in Eden Rice & Soy Blend to make a smooth, spoonable batter. If batter is not smooth and spoonable, add a small amount of rice & soy blend. Do not exceed 1 cup total of Eden Blend.

Spoon the batter evenly into prepared muffin cups. Bake for 25 minutes or until the tops of the muffins spring back to touch or a toothpick inserted comes out clean. Allow to cool for 5 minutes before removing the muffins from the pan. Cool completely on a wire rack.

We’ve posted in the past that Luke has a sensitive nose, and that we’ve experienced times where he’s reacted when the kids were having low blood sugars. We’ve since been trying to work with Luke and the kids to help him train his nose. A favorite game of the kids (and the dog) is the give one of the kids a treat and have them hide. Luke is then given the task to find a specific kid. Luke has recently gotten pretty good at it and has been able to help us find mischievous toddlers that occasionally like to play hide and go seek with out letting us know first. So tonight we decided to give Luke a real challenge.

For the 4th our family went to the city park to watch fireworks and let the kids run around. We took some treats with us and then split up for a little bit making sure that Luke was distracted while the older boys went and played. The park was very crowded and there was numerous fireworks going off in the parking lot keeping Luke a little on edge. I have to admit that I was skeptical that our pooch would be up for a challenge like this let alone be willing to even respond to the command with all the extra smells and noises that were a part of the course. He responded. My wife gave Luke the command to find Mark. He immediately focused and worked his way through the crowd following the winding and confusing path that Mark, Ethan and I took to get to the other side of the park and in a short amount of time found Mark. I was amazed.

Though Luke has come along with some extra challenges, I find the benefit of having a disciplined animal with a keen senses and a real attachment to the  kids a true blessing, and I am less and less worried about him being able to help us with eventually being on alert at all times for low blood sugars.

Now if we can just get him to never have an accident in the house again… I might actually learn to love the thing.

Even now, they still have so many misconceptions that I’m completely unaware of. Our 5 year old Mark for instance thought that he would be able to eat “bad for you food” when he grew up. He didn’t take it very well when we explained that, barring a cure, he would always have GSD. That sparked a huge melt down which took a good 30 minutes to dispel. It turned out that eating fruit and sugar wasn’t even the real problem at all.

I hope and pray that this trip will help the boys understand that they are not alone, but that there are others forced by their parents, to partake of cornstarch. Many thanks to all those who have spent so much time (and money) in pulling this off.

Is anyone up for a “cornstarch chugging contest” that I can record and post on GSDlife or Starchwars?

Next week we will prove even crazier than we already thought we were. If all goes well, we will begin… 24 hour cornstarch. This is only particularly nuts for us because that may mean getting up every two hours at night to feed him, every three hours at night to feed Jonny, and every 4 hours for Mark and Ethan. Oh, don’t forget we still take Luke (the 25 pound “puppy”) out every 4-5 hours as well. Can we say “night of the living dead”? Fitting for Halloween, don’t you think?
This time last year, Jonny was also 9 months old, so, we began the same process. The difference? Jonny’s blood sugar went totally crazy, and he had many, many, many explosive poops with just 3 grams of starch. Apparently he was among the 20% of GSD babies that can’t handle cornstarch by 9 months. I thought for sure I was doing something horribly wrong, and so we gave up for a while, but tried again the next month- several times. Each time it was a “poopy” experience. We were finally able to get him on 24 hour cornstarch when we went to see Dr. Weinstein last May. It was still difficult to believe that that much feces could come out of such a small cute kid, but at least his blood sugar held, and the diarrhea gradually lessend and eventually dissapeared over the next few weeks. The trip home was considerably better hypoglycemia wise, but I really could have done without changing his diaper that many times on airplanes and in airport restrooms. I have a feeling the other travelers felt the same.

Our son Ethan just had his fourth birthday, and received a thoughtful and creative gift from his “girlfriend” Karlee. She understands that we are training a dog that will (hopefully) be able to help the boys when they get sick. So, she built him an awesome robot out of tin cans- in case Luke doesn’t work. Ethan loves it!

The boys got sick, again, last week and Dallin (the baby yet to be put on cornstarch) has had crazy blood sugars. His blood glucose dropped down to 60 last week, so while we were treating it we had Luke come over to him. I gave the command “Luke, check” and then let him lick the baby’s feet which is something we normally don’t allow. All the boys had gathered for the drama, but Ethan bolted from the room, and quickly returned with Karlee’s robot. He carefully placed it next to his little brother and commanded “Robot, check! There Mommy, Dallin will be O.K.” Score one for Mr. Roboto.

The other evening Mark, Ethan and I went for a walk around our neighborhood. When we finally made it home, it was time for bed, bedtime snack, Jonny’s cornstarch, and to warm Dallin’s bottle. We put Luke in his crate, Mark and Ethan had started eating, and Luke freaked out. We decided to see what was wrong with him, so we opened the crate. Normally, Luke just sits there and waits for us to attach his leash. This time he bolted downstairs just like the first time he detected a low blood sugar. So, we tested Jonny first since it was time for his cornstarch anyway. He was fine. Then we moved on to Dallin- he needed to eat, but he was still in the upper 70′s. Then we tried Ethan, he was good. A little disheartened, we weren’t going to test Mark. After all, he’d been eating. We decided to anyway, just for good measure. Bingo! he was at 74 and since he’d been eating for a good 10 minutes, he must have been lower than that. Score 3 for Luke (he’s done this twice before).

Today Rebecca came over to help us train Luke. It was great! I can’t believe the stuff she can do with him. He still has a lot of work, but he’s doing a lot better than I was expecting him to by now. She did some set ups with him by placing food on the kitchen floor and then correcting him if he went for it. It only took a few tries before he was smart enough to want her praise more than the food. We also played hide-and-seek with the boys. She gave them a treat to hold and then told Luke to find that child. Needless to say, all the boys (including the four-legged furry one) want to play again.
After we brought the dog in from training outside, he bolted for the living room where Mark and Dallin were. The first reaction is to correct him, but he started acting hyper and spazzy in a really weird way. It’s difficult to explain, but it was different from just a dog that got too excited. I knew Mark hadn’t been eating very well today, and he’d been playing outside in the cold (both of which can drop blood sugar) so I decided to test him even though Luke wasn’t acting as crazy as he usually does when someone is low. Mark was fine, and Dallin still had another 30 min. before he was due for his next bottle. I went upstairs and got Jonny out of bed etc. But 10 minutes later, while Luke had calmed down a bit, he was still acting strangely. So we tested Dallin. Rebecca knelt on the floor with me, and Luke came over and started licking Dallin (which is usually not allowed) and nipping at Rebecca’s ear. Ya, weird dog. My dad joked that Luke must be jealous, but Dallin’s blood sugar turned out to be at 56, which means he was probably around the 75 mark when Luke started acting crazy in the first place. AAAHHH! We immediately gave Dallin dextrose to boost him, as well as his bottle, all the while letting Luke lick him and giving the command “Luke check” with a healthy dose of praise. I of course didn’t remember to give him a treat until after we got Dallin under control, but Luke seemed pretty happy with just the praise- and me finally getting the hint to take care of Dallin.

While he didn’t do a full scale “freak out” like he has when Mark and Ethan were low, I theorize, that is simply because Dallin gets to the 75 mark pretty much every 2 hours, so it isn’t that weird for him. He also knows that we’re more careful with how we let him interact with Dallin.

So… that brings the total score for Luke up to 4 (including the other two times) and Mr. Roboto 1. Well, at least the Robot is a cute decoration, and he doesn’t eat nearly as much as Luke.

10. Set an alarm clock. Nice, but if it’s too close it’s easy to roll over and turn it off in your sleep then call the manufacturer in the morning and scream at them for making a defective clock. Don’t they understand how important cornstarch is?!?!?

9. Place the alarm clock across the room. Somehow we could still sleep walk our way through turning it off (or at least pressing snooze) and climbing back into bed.
8. Set two alarm clocks. Our first alarm goes off in the boys’ room just across the hall. If that isn’t sufficient to wake us at 2am, we have another, set 10 minutes later, that goes off in our room.

7. Booby Traps. The boys often like to covertly help us after going to bed by placing booby traps such as legos and sharp plastic toys they’ve scavenged from various birthday goody bags scattered strategically in the path to the alarm clock. This way they are certain we will step on as many as possible and be fully awake during the brief sojourn into their room to turn off the alarm- ensuring we are painfully awake at 2am.

6. Setting your cell phone alarm to the sound of your child’s voice saying “Mommy, it’s time for my cornstarch. Mommy, get up and get me my cornstarch.” etc. Ingenious. How could you possibly sleep through your child’s angelic voice pleading for cornstarch? After an entire day of three whinny boys (#4 can’t talk yet) saying “Mom… I wanna pony. Mom…. how come Dallin gets to be on a feeding pump and I don’t! Why don’t butterflies have purple eyes?” etc., I’m afraid I’d be more likely to tune out their voices than an annoying beep at 5am.

5. A quick shake. For us, that’s usually my husband grabbing my foot to make sure I’m up to starch the boys while he gets Luke out of his crate for a bladder brake. Others, however use an innovative alarm clock called Shake Awake that actually vibrates- hard. The advertisement shows a woman serenely sleeping with the alarm on the bed next to her pillow. I’ve heard of other GSDers actually having to put it under their pillows to increase the cornstarch jolt. As if we’re not shaky enough from sleep deprivation. However, it is particularly useful when trying not to wake an entire house, especially when vacationing at Grandma’s house.
4. A telephone wake-up service. Not limited to hotels anymore, there are plenty of agencies like Wake Up Land where you can pay a small fee and be woken up at a certain time every day. Who knew there were others as desperate as us to actually look for something like that.

3. The Clocky Robotic Wheeled Alarm Clock. This wacky alarm will actually roll off of your bed side table and then, like your poor meatball on top of spaghetti, will roll right out your door. I’m considering giving this one a try if not for any other reason than to watch my husband chase the thing around trying to pounce on it and finally turn it off at dark-thirty in the morning. The mental image is priceless.

2. The ball shooting alarm clock. This is my personal favorite suggestion, I’m just not sure if it’s legitimate. Supposedly you can aim it at your head and it will shoot balls at the appropriate time to ensure that you are properly awake and seriously grumpy/ lumpy. My google searches didn’t come up with anything for this one, but again, fun mental image. As long as the alarm isn’t aimed at me.

And the Top Answer is…

1. Find a poor relative/ employee you can guilt into doing cornstarch for you. Nothing is easier, or more peaceful, than finding someone you can trust to either stay up all night for starch times, or at least wake up instead of you. We currently get one full night of sleep a week, and it is heaven sent. The only problem is that it is usually our date nights also, so we end up going out late and consequently going to bed late. But somehow the lack of stress for that one night alone is enough to at least get us through the next week.

Thank you Aunt Bonnie!

We’d love to have your feedback to know if this could be a viable community for GSD.