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Monthly Archives: July 2011

Disney with a CWD and Food Allergy

Disney with a CWD and Food Allergy

The last time we traveled to Disney World, the kids were 7 and 4.  Some fond memories and some stressful ones!  But lessons were learned that helped prepare us for this trip.  Back then we were only dealing with a food allergy and soon discovered that Disney is the “happiest place on earth” for food allergic children!  And I can report that the parks are even better prepared for food allergies today!  I remembered the chaos of trying to get on the rides we wanted and the headache of dodging strollers and scooters (sorry to those of you who must use both…but not all stroller/scooter patrons appear aware of the roadblocks they create for those of us hoofing it!).

7 years later, we had the additional challenge of dealing with KC’s Type 1 diabetes…our first trip since her diagnosis.  I was determined to make this as easy and stress-free as I possibly could.

First step:  Be Prepared.

I researched the DOC (diabetic on-line community) and found many wonderful resources including Robyn Sturtevant Adams, an authorized Disney travel planner with Travel with the Magic.   http://www.travelwiththemagic.com/ She is married to a Type 1 and also the proud mother of a Type 1 son….and she’s a wealth of information!

So here are some of the things I learned:

Things to Take to Disney

Spibelt–an expandable pump pouch that keeps the pump from jiggling around. (www.spibelt.com)  KC wore her pump on every ride (Okay, she didn’t do Space Mountain  or any of the high thrill rides–but she did ride on the Star Tours ride at Hollywood Studios and the Test Track at Epcot)

insulated back-pack loaded with Epi-pen for #1 son, Novolog and Lantus flex pens, BG meter and testing supplies, extra batteries for pump, juice boxes, glucose tabs, 15 carb snack, string cheese and nuts, water bottles, antiseptic wipes, sharps container, calculator, sunblock, two drawstring backpacks to carry souvenirs, and a first aid kit.

That’s it…one back-pack for 4 people.

How to Manage Our Time at the Parks

Orlando in July is going to be…HOT!  And it was..so in anticipation of the heat and how it could affect KC, we made a game plan in advance of hitting the parks.

1.  Arrive at park opening every morning and leave around 12:30 p.m.

2.  Go back to hotel and swim, or get rest in the air conditioning.

3.  Hit the parks again in the evening until close.

In addition, each family member selected one ride at each park that was a “must do.”  We then used the customized map service on the Disney World website and printed maps.  We were able to look at where we wanted to be and decide what to hit first, second etc.  Using this strategy, we were able to get on most rides with absolutely no waiting in the mornings.  Our only morning wait was 20 minutes for the Jungle Cruise (in the shade the entire time) but we all agree that this was worth it..thanks to our guide Joshua from Lousiana!  He was terrific!

When we came back in the evening, we snagged a Fast Pass then hit other attractions.  All in all, in three days we only used Fast Passes 4 times.

Many people traveling with CWD will try to get a guest assistance pass to help beat the lines.  We decided not to bother the first day and were so successful that we didn’t try to get one at all.

Eating at the Parks

We chose to eat breakfast and most lunches back at the hotel for both economical and health reasons.  But we did have dinner at the Plaza in the Magic Kingdom and lunch at Via Napoli in Epcot.  I made reservations on-line, and brought the printed confirmations with me.  Needn’t have worried, both restaurants were wonderful to us.  The chef at the Plaza came out and asked #1 son what he would like for her to make for him and told him that they had Tofutti available for dessert if he wanted it (he decided to wait until later and get it at the Plaza ice cream parlor).  KC was able to get a kid’s meal portion (easier to count the carbs), plus steamed broccoli and had no-sugar added ice cream for dessert.  Our waitress brought out an entire binder filled with nutrition information for us.

Our lunch at Via Napoli went just as smoothly.  #1 son got his wood-fired, no-cheese pizza and KC was able to have sugar-free strawberry mousse for dessert.  Two happy campers!  Thanks to Davide, the manager, and Michel our waiter!

Next post will talk about how we managed KC’s Type 1….

Serendipity? Really?

Serendipity? Really?

My previous post was titled “Serendipity” and I know it begs the question “How could a child being diagnosed with Type 1 diabetes be serendipitous?” The dictionary  defines serendipity as “the accidental discovery of something pleasant, valuable, or useful.” Some of it’s synonyms are chance, fate, providence, luck, coincidence— hardly words we’d use to describe the death of a pancreas and the management of a chronic disease. But our lives have been filled with serendipity since 12/20/2010:

  1.  the change of KC’s well-visit from Dec. 14 to Dec. 20 because one week earlier her symptoms were not on the forefront of our minds. We could have missed this early diagnosis completely and KC could have collapsed on the basketball court.
  2.  the fact that Dr. N. was the enocrinologist who took our pediatrician’s call that day. The only ped. endo, that I knew by name prior to 12/20/2011 and one that I knew to be the best.
  3. the fact that we had all of Christmas break to begin to adjust to the changes in our lives
  4.  being able to reach the school principal during a school vacation and having her complete support
  5.  learning that our school librarian was also an RN
  6.  the words of Nurse Sarah who told us that unknown to us, KC was not the only Type 1 in the room with us and that in the coming weeks, we would be surprised to learn how many people with Type 1 were already connected to our lives. She was the T1 in the room with us–what an inspiration to see a healthy wife/mother/nurse living with diabetes.
  7.  Nurse Sarah’s words came true–we were overwhelmed by the number of PWD who came to light after KC’s diagnosis…some we knew about–the mom of one of KC’s classmates in kindergarten (dx age 19), the 13 year old boy who lives next door (dx age 9) and some we didn’t–old friend from high school (dx age 7 ) and the wife of another friend from high school (dx age 28). The list grows everyday with cousins of friends, co-workers, the receptionist at KC’s school and on and on.
  8.  knowing each of these wonderful PWD and their stories
  9. having someone right next door who understood EXACTLY what we were feeling and knowing exactly what we needed.
  10. and weird as it sounds…having a child with a food allergy. 13 years of reading labels for #1 son prepared us!
  11.  finally, knowing that KC is an extremely intelligent, independent, hard-working, driven child who would want to take control of her diabetes and would follow the rules. She is amazing!

Serendipity: KC’s DX Story

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An athletic, active, energetic 10 year old, KC spent the fall playing sports for her school . She started off with volleyball and then went straight into basketball, with some tennis on the side. Autumn in the Southeastern US is still filled with hot days, so KC’s ever-present water bottle didn’t appear unusual. Likewise, I didn’t think anything about the occassional (or so I thought) getting up in the night to go to the bathroom. You drink alot, you pee alot….go figure!

Our family was going through a stressful time due to my dad’s carotid artery surgeries and difficult recovery. By early Dec. we were all exhausted and run down. Both kids annual checkups were scheduled in mid-December but our pediatrician doesn’t allow siblings to have appointments back to back so they were scheduled about a week apart with KC’s appointment set for Dec. 14. One look at my calendar showed a conflict with her basketball game…she hates missing a game, so I called and flipped her appointment with her brother’s scheduled for Dec. 20. And that my friends is where Divine Intervention, serendipity, or Fate –whatever you want to call it–stepped in!

Friday Dec. 17 was the kids’ last day of school before Christmas break. A day filled with parties (i.e. junk food) and sadly for KC, time to say good bye to a beloved teacher who was leaving the school. KC was sobbing at the breakfast table but managed to pull herself together in time to leave for school. She made it through the day and that night my husband, J, and I decided to take her out for Mexican food, which we usually do only when #1 son isn’t with us as his milk allergy is harder to manage in places that serve so many foods covered in cheese. So with #1 son at a movie with a friend, it was KC’s night alone with Mommy and Daddy. She ordered chips and queso dip, plus large glass of milk before dinner. After drinking the milk, she complained of feeling sick. I quickly retorted that all the junk food she ate that day probably was to blame—little did I know. She refused to eat any dinner and begged to be taken home. The next morning she was lethargic–the girl who usually spends her free time dancing or exercising for fun was laying on the couch. Sunday more of the same. We had to drop #1 son off at a dance and decided to take KC to the mall to help pass the time. On the way to the mall, she begged for a drink. “The first thing I want to do at the mall is get a drink….you don’t understand, Mommy, I’m really thirsty…” So off to the food court and she orders a fruit smoothie (ok, knowing she has T1 you can see where this is heading, right?). We pass by the Godiva shop and do something we NEVER do (again, because of #1 son’s milk allergy) we buy her CHOCOLATE! Then on the way out of the mall, she begs for another drink..we hit a vending machine and I’d like to think we got her a water but I believe we bought her a Sprite. We get back to the dance and she is ready to throw up…but can’t….so she drinks tons of water and lays on my lap. In the car on the ride home, she is making smacking noises as she tries to get saliva…”Mommy, really, I HAVE to have something to drink NOW!” J reminds her of her check up scheduled for the next day and tells her to make sure and let the doctor know that she hasn’t been feeling well….

Dec. 20, 2010 after a breakfast of two waffles and a glass of milk (plus the Hershey Kiss she stole on her way out the door) we headed off to her “well-visit.” KC’s biggest fear was the Flu shot that was waiting for her! KC reminded me to tell the doctor about her thirst…and this is where denial comes in–I could not believe that KC could have diabetes because our next-door neighbor (#1 son’s best friend) has T1. It is unbelievable that two kids on the same block could be T1s–what are the odds? Anyway, the doctor came in, did his exam, found KC to be in great health and then asked “is there anything that you are concerned about?” KC’s big blue eyes bored into mine….I heard myself say “well, she’s been really thirsty….but I think she’s coming down with something….”

Dr. L. looks through her files and says “there is some sugar in her urine, but that is normal depending on what she had for breakfast…”

Waffles, syrup, Hershey Kiss….my mind is racing…

“I’d like to do a blood glucose test to double check.”

Okay….

Her BG is 435. Normal is 80-150.

The world stops moving.

As if through a fog filter I hear the doctor…”…juvenile diabetes….let me make a call…”

He leaves. KC cries…she knows what this is. She’s afraid. So am I. I hear Dr. L on the phone outside our exam room. He mentions Dr. N…I know this name. I know his wife. He’s the best ped. endocrinologist in town. I have a friend whose son sees him for another reason. I feel a sense of control return.

Dr. L says get to Children’s Hospital. Do not stop on your way. They are waiting for you. KC is healthy and will be treated as an out-patient.

I have no idea what this entails.

In shock, I get KC to the car. I stand outside and cry. Then I begin the phone calls…my husband, my mother, my son….

And then life changed forever….