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.  

Now, the whole time Dr. Weinstein was excitedly telling me about Jonny and Dallin’s excellent lab numbers, I had to remind him that Mark and Ethan were definitely having more lows, and not to praise me too much, because he’d be eating his words the next day.

Second Report Card Time: Again, we had my wonderful, can’t express my appreciation enough, father watch the kids while Dr. Weinstein and I headed for the playroom.

We sat down and he said “Good news or bad news first?”

I picked bad.

“Well, Jonny was only the star for one day. The good news is, Ethan beat him”. At this point I have to grab the bottom of my seat so I don’t start dancing around the room, while I pretend that I’m one of those cool people that never cries or jumps for joy. I don’t think Dr. Weinstein bought it, but…

The results were:

Mark: Just a reminder, Mark was 3 ½ years old by the time he was FINALLY diagnosed correctly. To give you some perspective, I’ll put what his levels were in February of 2004 (several months before a firm diagnosis) and his results now. Plus, like in the previous post I’ll put what is “normal” for a “normal child”. I didn’t take a lot of time researching the normal numbers, so if they’re wrong, or you find a better/ more accurate link, someone please correct me.

Cholesterol (should be less than 170)                                    2004: 235             2009: 115
Triglycerides (should be less than 200)                                2004: 2546          2009: 91
HDL (good Cholesterol should be above 45)                       2004: ???               2009: 46
LDL (bad cholesterol should be less than 100-110)         2004: ???               2009: 51
Uric Acid (not sure of normal levels)                                     2004: 7.5              2009: 4.1
AST/ALT (Measures liver damage- normal levels between 5- 60 according to this article)
AST                                                                                                        2004: 596             2009: 28
ALT                                                                                                        2004: 668             2009: 23

Abdomen description: 2004: “ Distended, liver 11 cm below the costal margin.
2009: “ Liver with non-tender edge 3.2 ccm below costal margin; (-2.0 cm since last year)”

Woohoo Mark! Did you see how much his liver has gone down?!?!?! His stomach looks perfectly flat to me now.

Ethan: Reminder- he was about 20 months old when diagnosed.

Cholesterol (should be less than 170)                                    2004: ???                 2009: 99
Triglycerides (should be less than 200)                                2004: 655               2009: 81
HDL (good Cholesterol should be above 45)                       2004: ???                  2009: 48
LDL (bad cholesterol should be less than 100-110)         2004: ???                 2009: 35
Uric Acid (not sure of normal levels)                                     2004: 7.6                2009: 4.1
AST (5-60)                                                                                         2004: 398               2009: 27
ALT (5-60)                                                                                         2004: 434               2009: 23
Abdomen description:

2004: “protuberant.” apparently, no real measurements were taken at that visit. Perhaps because he was a screaming  17 month old?
2009: “ Liver with non-tender edge 3.6 ccm below costal margin; (-1.6 cm since last year)”

Haha! Take that you life-threatening liver disease! We’re winning this war!!!!
Again, for more bragging, all four of my boys received a description of “outstanding” and “now normal” in their evaluations.
And the sugar-free icing on the proverbial GSD friendly cake- Dr. Weinstein actually described me as “laid-back” to another physician. No one reading this blog is allowed to disillusion him.

Meanwhile, back at the research clinic, Mark, Ethan and I were having a blast. They got both of their I.V.s in on the first shot. Mark didn’t cry, whine, or squirm. As long as he could see what was going, he was fine. My kid is so brave! Ethan had the hardest time of all of them. He did a pretty good job; at least he didn’t cry or slap the nurse- this time. After the worst was over, we went to the playroom and had fun playing Sorry, Fooseball, etc. It is so much better now that we don’t have to worry about kids putting their hands on the floor, intentionally pulling out I.V.s, etc. I actually had a really fun time just playing around with my older boys without the little ones demanding attention. I guess all of those people that said “Have fun on your vacation” when we told them about Florida were on to something afterall.

My dad came back after dinner, and party time for me was over. We stayed with all four boys for a while, and then I took them back down to where my dad Valet parked. By this time it was probably 10pm. In the lobby there were a few people just hanging around on their laptops, but I heard a car backfiring and then a bunch of people in uniform walking swiftly to another exit. I went outside to pick up the car, and of course, it was closed. Duh, I’m not in Las Vegas anymore… should have known. So, I carry both Jonny and Dallin back inside to call a security guard like the little valet sign said. Back in the lobby I see a lady crying and screaming hysterically “it’s all my fault!!!!”. While her friend tries to comfort her, and I started to get a little nervous. Okay… this sort of thing just doesn’t happen in nice little sheltered Idaho. At this point, I can’t carry the boys anymore, and they’re so “done” being expected to hold my hand the whole time that they run in opposite directions if they free themselves of my deathgrip on their hands. I went upstairs to get reinforcements- AKA- my dad. We came back downstairs and called for the security guard to help us get our key. 10 min. later she shows up, but it’s her first night on the job, and she has no idea what we want to do. She calls for back up and 15 min. after that we finally get our key and walk through a dark parking garage, grateful to see two more security guards, and we’re off.
I drop my dad off at the entrance and I start driving to the hotel. While waiting to make a left hand turn at the light from Archer onto the street the hotel is on, I take a sigh of relief and think, only a few more hours of hospital stuff tomorrow, and we’ll be home in a couple of days. Everything looks brighter, I can do this. Then Jonny’s chipper little voice calls “Hiya Mom, watcha doin?” Awww, I love that kid. Huh. He sounds kinda close, his carseat should be right behind mine… I look down.
He’s sitting right next to me.
“Ack!!!! How did you get out of your carseat!?!?!?”
It’s not as if I can pull over to buckle him up again. The closest safe place to do that would be in the parking lot of the hotel.
“Oooooh that boy is gonna get it!”
Then I happened to glance at the car stopped next to us. Naturally, it’s a police car. My mind goes blank- until I desperately start praying that he won’t see my three year old sitting next to me. I don’t know how much that ticket would cost, but just traveling to see Dr. Weinstein isn’t exactly cheap, and we’re already on a budget. Panic, deep breath, panic, the light turns to a green arrow, and I proceed cautiously. We pull into the hotel parking lot without getting into a car accident- or getting a ticket. Phew. Adrenoline running high I lecture to my 3 year old exactly how bad it would be if we got hit by another car while he didn’t have his seatbelt on. I have no idea if he “got it” or not, but he hasn’t dared to get out of his carseat again.
The boys get baths and storytime and I finally get to call my husband. Life is much, much, better. He has a very calming effect. I don’t have to mix up formula for them to take their cornstarch in, and they’re on an every four hour schedule instead of three! It’s amazing what another hour of consecutive sleep twice a night will do for you. I slept very well, and woke up still tired, but not the “I can’t do this anymore” exhausted. Always a good thing.

As many of you know, you receive a parking permit in the handy dandy packet that they send you a couple weeks before your arrival. The only problem is the parking garage is on the opposite side of the hospital than admissions and the Clinical Research Center. I was used to and expecting this, but it was a bit new to my dear old dad. It wasn’t too bad this time because we’d brought the double stroller and most of the stuff we needed fit in it. But I heard a few snide comments from the peanut gallery since I had to get a running start to get up the hills (I’m glad I could make their day). The older boys had to walk, and while they weren’t too excited I knew it would be good to get some energy out before they were cooped up for any length of time.

Admissions was alright. They were very friendly at the front desk, and I think one of the receptionists was checking out my dad (ewwww- he really needs to start wearing his wedding ring), but they were pretty busy, so it took a little longer than usual. I have to say, I REALLY miss having Connie in admissions. Thankfully, we get to see her even more now as the GSD program coordinator. My dad took the boys on another potty break, and it was time for cornstarch.

I decided to race upstairs to our room to do cornstarch even though it would be a few minutes late. Unfortunately, the place is a maze. I had written directions from the little packet, verbal directions from the admissions receptionists and I still got a little lost at the elevators. I would have felt really sheepish if we hadn’t asked for directions from people who’d worked at Shand’s a couple of years- and then they got a little turned around. At least I remembered where it was for the rest of the trip, right?

As always, as soon as we walked through the CRC doors, there was immediate relief. It’s the one place where I never have to worry about cornstarch being on time, or if the food they’re giving the boys is “GSD friendly”. The same nurses the boys always have were there waiting for us (and they weren’t even dreading it). They had Jonny and Dallin’s room all ready, and we had cornstarch done in a flash. We got to see Dr. Weinstein within minutes, and we even got to meet another family with two GSD daughters. Always exciting.

My only complaint is that they can only admit two GSD patients at a time. Sad for me, but since even I get the boys confused- and i’m not taking blood every hour as well as urine samples- I can’t really blame them.     Jonny and Dallin were admitted first and later that morning my dad took Mark and Ethan for a day on the town.

It only took one poke each for Dallin and Jonny to get their I.V.s. It’s always been 2 or 3 times before, but it’s been almost a year and a half since the last time they needed one. Both of the boys were really brave and I must say I think I’ve perfected my technique for holding the boys down while the nurses are placing them. We were so proud. Hardly any screaming and no tears at all- and they even said “thank you” when they’d finished. Of course, they were loaded up with toys from the treasure box for their bravery.

Speaking of toys… Every time Dr. Weinstein came through the door “Who wants presents?!?!?” would announce his arrival- it was insane! He spoiled the kids rotten, and enjoyed it every bit as much as they did. Even so, Jonny was naturally wary of anyone wearing a stethascope. It wasn’t until later that night when things had calmed down a bit that he took Jonny (an avid Toy Story fan) to see Buzz Lightyear’s “space ship”. From that moment on Dr. Weinstein was Jonny’s best friend, and “space ship?” was the first thing out of Jonny’s mouth whenever he saw Dr. Weinstein.

Forida Museum of Natural History

Mark and Ethan had a great time that day. Grandpa took them to the Florida Museum of Natural History. They had a blast, especially at the butterfly exhibit. It’s one of their favorite memories of the trip. He even took them to Texas Roadhouse for some steak. Spoiled kids.

My dad came back at about 8:00pm and I took the older boys back to the hotel while he slept at the hospital with the little two. This sounds cruel to do to an almost senior citizen, but as anyone who wakes up multiple times a night to do cornstarch knows, Shand’s is a vacation resort. Besides, I’d promised I’d take Mark and Ethan swimming and my dad wasn’t very comfortable with checking blood sugars like you need to after swimming.

To be continued…

After we found the baggage ticket, she said it would come in on the next plane and they’d send it along to our hotel in Gainesville. I filled out a few forms, and she let us borrow an airline seat until the other one could be returned. It was dripping with a bit of goo, and was infested with who knows how many germs, but after the day we had, I was very grateful for it.

A few more treks to and from the rental car station we were on our way in a nice clean mini van. My dad had me pull out the GPS while we were driving, but it took her a while to boot up and figure out we weren’t in Idaho any longer. We followed our mapquest directions until we had to make a choice between following “Maggie” the GPS or our map. “Maggie’s never steered us wrong before”. Famous last words. Several wrong turns and watching for exits that didn’t exist later we finally stopped at a fire station to ask for directions where the firefighters laughed and said, “Ya, don’t trust those GPS things out here.” Nice. We finally made it to Gainesville, and it was only about 20 minutes longer than it should have taken.

“Maggie” is now nicknamed “Naggie”.

We checked in to the Sleep Inn off of Archer. It’s only about a year old, and very nice for the price. Their hospital rate was only $71. Very clean, fairly comfy. They had a fridge and microwave in the room that came in handy.

The boys and my dad go to sleep, but of course I’ve forgotten my alarm clock, and the hotel one only has one alarm, so I set my cell phone. I wasn’t sure if it would work or not and so I ended up staying up all night so I wouldn’t miss a cornstarch and repacking for the hospital stay. By the time it was time for everyone to wake up I’d repacked, gotten ready for the day, eaten, installed our own car seat that the airline had sent us, and had everyone’s clothes laid out for them. I’d even been able to find out what foods were GSD friendly at the continental breakfast downstairs. Oh, Ya, and I’d remembered to do 10pm, 11pm, 2am, 5am, and 6am cornstarch.

End of Day 1…