1 1/2 cups all purpose flour
1/2 cup unsweetened cocoa powder
Mix together in a small bowl. Set aside.

1/2 cup butter/margarine
1/2 cup Sugar Twin (or sugar substitute – I’ve had great results with baking with Sugar Twin)
1/2 cup dextrose
1/4 tsp. EACH of salt, baking powder, baking soda
Beat butter in large mixing bowl for 30 seconds until fluffy. Add Sugar Twin, dextrose, salt, baking powder and baking soda. Beat until well mixed.

2 eggs
1 1/2 tsp. vanilla
Add to butter mix and blend well. Gradually beat in the dry flour mix.
Shape into 1 inch balls and place on an ungreased cookie sheet. Press down center of cookie with thumb.

FROSTING:
1 cup (6 oz.) Hershey’s Sugar Free Chocolate Chips (in the baking section – last I checked they did not have sorbitol in them)
2 T. soy milk (do not make too runny) — sidenote from Jill– I wonder if unsweetened almond milk would taste better.
1 T. (or less) maraschino cherry juice (contributes an insignificant amount of sugar – less than 5 grams for the entire tablespoon)
Melt in a saucepan on low heat, stirring constantly. Spoon onto about a tsp. or less into each thumbprint on the cookies.

Bake cookies 350 for about 10 minutes – until edges of cookie become “crusty” or “slightly firm” to touch. Remove from baking pan and cool on wire racks.

Another neat trick from Stephanie…  For any remaining chocolate frosting, cover pretzels with the chocolate and freeze to harden. That woman is brilliant!

Ingredients:

1/2 c. unsalted butter (margarine works well too)

1 c. Splenda

1 large egg

2 tsp. vanilla extract

2 c. flour

1/2 tsp. baking powder

1/2 tsp. salt

Beat butter at medium speed with mixer until creamy. Gradually add splenda, beating well. Add egg- mix well. Stir in vanilla.

Combine flour, baking powder and salt in a separate bowl. Gradually add flour mixture to splenda, beating until blended. Do not overmix.

Place dough on a lightly floured work surface. Roll into a circle and wrap with plastic wrap (or put in a bowl) and chill for 1 hour, or until slightly firm.

Roll cookies out on a slightly floured surface to 1/8 inch thick. Cut with cookie cutter and place on a lightly greased pan.  (I used a baking stone so I wouldn’t add more grease, it worked VERY well, but I had to increase the time by a few minutes.)

Bake at 325 for 8-10 minutes.

IMPORTANT SPLENDA COOKING TIP: Things baked with Splenda will not “brown” to let you know that they’re done.

Frosting

Disclaimer: I can’t remember actually using this frosting recipe, but it’s on the same scrap of paper that I wrote out the “splenda cookies” on, so hopefully it’s as good.

Ingredients:

1 1/2 cups Splenda

1/4 cup cornstarch (Is it just me, or does it feel wasteful cooking with this stuff?)

5 tsp. water

1/2 tsp. vanilla extract

Place splenda and corn starch in blender and blend until a fine powder. Pour into small bowl. Add water and vanilla extract. Stir well- makes 5 servings.

For those of you sending these to school, I like to put the frosting in little ziploc baggies. Then you can just cut a hole in one of the bottom corners of the bag, and it’s ready to push out and decorate.

Happy Valentine’s Day! And try not to have a heart-attack at the party when the other students try to “share” their special treats. 

Saturday afternoon: THE WEDDING

Oh so very fun, but a little crazy. We were fortunate enough that they post-poned the wedding a little while so we could do cornstarch right before-hand instead of having to leave in the middle, or starch early and throw off our schedule.

Even though they had all gotten their bolus feeds on time, about 30 minutes later, in the middle of the ceremony, Jonny fell into a deep sweaty sleep (a tell tale sign of hypoglycemia). Naturally, I didn’t think to bring a glucometer with us when we walked up the isle, so Ben had to sneak around all of the guests, and walk back inside to get it out of our med bag. And… Jonny’s blood sugars were just fine, he was simply tired. The ceremony was great, and my brother had rented a boat to take the guests (mainly the kids) around the bay. The boys were itching to go, and we had their next scheduled feeding looming in the next 45 minutes, but we still needed to do photos. My dad took his job of being in charge of the boat very seriously and disappeared to the dock shortly after the ceremony ended. Between waiting for him, trying to keep the boys entertained and not jumping into the bay, worrying about how much time we had until they needed food again, we didn’t get very many photos of the family. Sad. The boat ride was very fun though, and the boys LOVED it, and we were still able to get them dinner pretty much on time.

What we learned:

Keep a glucometer (and ways to treat low b/gs) on hand at all times- even during wedding ceremonies.

Mark is a great dancer.

Ethan can make a friend wherever he goes.

Jonny doesn’t know not to take fruit from strangers.

Dallin was a most popular dancing partner- even in his cast.

Sunday: We calmed things down a bit. All we did was visit the tidepools, where my brother and his new wife showed the boys some amazing new creatures- that spit.

]]> http://starchwars.com/2010/01/the-wedding/feed/ 0 http://starchwars.com/2010/01/busy-october-post-1/ http://starchwars.com/2010/01/busy-october-post-1/#comments Wed, 20 Jan 2010 14:54:15 +0000 Jillian http://starchwars.com/?p=253

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.  

September:

Trauma/Drama 1: Mark started 1^st grade, and Ethan began Kindergarten. Some people would say “Wow, your day just got easier, didn’t it?” and they’d be wrong. Now we had to pack med and lunch/ snack bags- double check them- and then run down to the school anything that we forgot to put in them- like, oh, test strips for the glucometer. Plus take the boys to the school, and pick Ethan up 3 hours later, then 3 ½ hours after that, pick up Mark.

The good news is we have an amazing school. I love the nurse, teachers, aides, principal, EVERYONE. The nurse’s care plans are excellent, and the kids are receiving great care. They’re out of the classroom as little as possible to receive treatment, and considering what the stress of school does to their blood sugars, everything is handled perfectly. Nevertheless, it’s a transition.

Trauma/Drama 2: We did neuropsych evals for all of the boys. (see previous post for Mark’s first eval).

What we learned: Jonny and Dallin needed to be in speech therapy- and preferably developmental pre-school as well, and we need to set up a 504 (at school) for Ethan.

Trauma/ Drama 3: Dallin got a half cast when he should have gotten the whole cast off, and he got a walking splint cast thingy when he should have been cast free.

What we reaffirmed: Never trust a doctor that thinks he knows about GSD when he’s never treated anyone with it.

Exciting Drama 4: Ethan had a birthday party.

What we learned: Pirate themed outdoor parties are best when inviting a bunch of rowdy 5-6 year olds, and water balloons make great “cannon balls”.

Exciting Drama 5: We packed for our trip to San Diego for my brother’s wedding.

What we learned: Packing for a 6 day trip takes a full week, and 168 pre-measured bags of cornstarch. Also, dividing them into each day and each night was very helpful.

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.

We then tried to take the kids to the beach. This time, relying on Naggie Maggie GPS to get us there. Unfortunately, a new freeway had been constructed since her programming, and we spent a couple hours as a blinking dot on a green screen.
We finally got to the beach, and were even able to find a parking spot. We only had time to stay about 30 minutes, but that was enough with all four boys.

This is the first time they’d ever seen the ocean, and I was able to teach them the delicate art of wave chasing, picking seashells, and building sandcastles. Ok, we didn’t actually build a sand castle because I didn’t want to spend the next 12 hours in airports with sand in my pants, but… we got to look at some nice ones.

We were able to get the airport and turn in the car without too many misdirections from Maggie, and I feel sorry for whichever poor rental car agent that had to clean out that minivan.
Checking in was a challenge because they had difficulty finding my dad’s reservations, so we were running a little late by the time we finally got to security. (“Late” by my dad’s standards means we only had 68 minutes to get through security and walk to our gate). Metal detectors and drug checks were as fun as ever, but security was exceptionally nice about it.
Our only snag was when my dad asked a security officer something about the laptop we were carrying-on and the officer said “Wait here.” So, my dad waited. The laptop came, I got all of the kids re-shod, and the stroller re-packed and still, my dad was standing next to the conveyer belt. I asked what he was waiting for and he informed me that if I wanted him arrested for a felony by disobeying a security officer’s orders of “wait here” then by all means I should drag him to our gate. Five minutes later there was still no sign of the original officer who instructed him to wait, so we asked another officer what we were waiting for. Five minutes after that, the second officer returned and said that the first had clocked out 10 minutes ago, so he assumed we’re good to go.
The gate wasn’t too far from the security station, my dad took the boys for potty breaks while I requested seating together. Then it was my turn to run the little boys (individually) to the bathroom for diaper changes before we took off. It wouldn’t have been so bad, except the closest bathroom was out of order, and the electric walkway was too. So, after jogging to and fro a couple of times, we made it back with 40 seconds to spare before boarding.
The flight was pretty easy… normal squirming, but overall, well behaved kids.
Leaving the plane Dallin, suddenly started screaming. We couldn’t figure out why until we saw a flight attendant chasing after us with the “Dr. Weinstein motorcycle”. Crisis averted, thank you Delta, thank you. We’d requested transport, as always, but of course it wasn’t there. We did, however, see a cart drive by us and I tried to stop him, but he avoided eye contact. A couple of minutes later the same guy was driving next to us. I made eye contact this time, and was about to ask for help when he stopped for the woman walking next to us- wearing the mini skirt -and left as soon as she got on. Oooooooh, I was MAD. By this time it was about 10:00 or 11:00 pm local time, so at least it wasn’t crowded. We passed the mini skirt woman a few gates before reaching our own, and before we had time to set our stuff down and make seating arrangements, my dad walked off, without saying a word. I think he needed a little “alone time”. However, he did return bearing gifts of fast food. The kids screamed and ran around no matter how much I told them to sit down, and I got some pretty interesting “Why can’t you control your children???” and “Please tell me they’re not on my plane!” looks from fellow passengers. The flight left pretty shortly after that, and the kids were calm-ish and slept most of the way home.
Ben had just driven 5 hours to get home from his business trip to Utah, and had just enough time to go home, switch cars, and come and get us. I have never in my life been so happy to see him! Since it was technically past midnight, and therefore Mother’s Day, he even had a dozen roses waiting for me. He’s awesome. I slept the whole night, and even slept in until 9 am- without any guilt.
My dad went home, and according to my mom, slept for 3 days straight. “What did you do to him?” was her only question.
He still gives a little shiver and refuses to answer any questions related to his “Florida vacation”. He also refuses to believe that this was by far the easiest trip to Gainesville that we have ever had.

THE END
~well, at least the end of the travelouge.

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.