Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Saturday, October 23, 2010

Make A Wish and Disney Cruise Line

I am never out of words even if I claim it sometimes but this time I am faced with a new challenge and that is how can I put everything that is on my mind in one blog entry?
I will skip my experiment with Southwest this time around but will get back to it soon in another blog :)

There is one thing I like to say in the beginning and that is the fact that Make A Wish and Disney are a potent combination and that these last 7 days were a complete dream come true and it was magical and wonderful from start to finish.
The boys and I started our trip on October 15th by driving to Denver to spend the night at the Hyatt Plaza Airport Hotel. If you ever need to spend a night close to the Denver Airport I can tell you this is the place I would want to stay at. It was beautiful and the personal was extremely attentive from check-in to check-out. We got to leave our car parked at the Hotel and we took the shuttle to the airport in the morning of the 16th.
This is were I will add our Southwest trip at a later point :)
We met Ron at the Orlando International Airport and I have to say I am used to a lot of Airports and for some reason I forgot how busy this one was. It was almost as busy as Las Vegas only with more children in the mix :)
Ron came in from Miami and was battling a head cold along with an ear ache. This time we spend the night at the Hyatt Airport Hotel which was as wonderful as the one in Denver and once again Make A Wish had everything in place for us to not stress and worry about the next days itinerary for our transfer to Port Canaveral.

We ended up at Port Canaveral by 12:15 PM on October 17th and we were right away guided to the red carpet entry for check-in. After some pictures with Minnie Mouse we were on board the Disney Wonder eating lunch by 1 PM and the magic did not end until we were home again on the night of the 21st.
For one there was Brent, who was Disney's Make A Wish Host. This Gentleman who was on the cruise along with us and 4 other families spoiled us every single day with the most yummy foods delivered to our room, information packages about our destinations including excursions. He brought gifts for the boys and set up an private photo session for all of us Make A Wish families with the Ship's Captain and Mickey Mouse as well. The boys loved the fact that the Captain told them that the ship was in charge of not one Captain but four! Himself, Captain Mickey Mouse, Captain Jack Sparrow and Captain Hook. We got to meet all of them and I promise you the boys never stopped smiling, even in their sleep :) We only met the other four Make A Wish families during the Photo Session and they were all lovely but interestingly we never crossed path again.
I am truly a huge fan now of Disney Cruise Line and there are so many ways why I think they are amazing. Yes, they are experts of course in entertainment but it is the level of quality that struck me the most. The shows were spectacular and we did not miss one. Alexander was unable to close his mouth through all of them that's how much he was in awe. The Deck Parties were fun even thought they were pretty crowded but still all four of us were dancing away. Most of the time it was Ron and I dancing while we carried the boys :)
We even got to see the movie Secretariat which was great:) Ron and I might have liked it better then the boys but they still sat through it for two hours :) Which brings me to the other part about this Cruise. There is lots of time for the Adults as well due to the amazing set-up of the Kid's Clubs. There was the Oceaneers Club and Lab which our boys loved. According to them they did not get enough time in there but we still managed an hour here and there. It is fully supervised with great activities and every child wears a bracelet and as parents you receive a pager in case your child needs you. We got paged twice from Connor who had fun but after a while missed us. Alexander on the other hand did not want to leave 'ever' :)
If you have been on any Cruise before then you know how abundant the food can be. There was food everywhere and if I thought I had made some strides in working out and keeping in shape then I can tell you it all went over board on that Ship. You had four Restaurants but also unlimited Pizza, Hot Dogs, Burgers, Fries and Ice Cream on the pool deck at any time. I did get up early the first morning and went running on Deck 4. Now it says if you run 3 loops around the ship you run one mile. I can now do three to four miles on the Elliptical but only lasted for two loops on the ship. There truly was not to much traffic since I only encountered a total of 5 other runners :) Now morning number two I went to the Fitness Club at 6:15 AM and it still felt wrong to even be there - haha
We had our first Port Adventure In Nassau and had to leave the ship at 9:30 AM for our trip to the Blue Lagoon Beach Day. Now a huge part of Connor's wish was a day at the beach and this part of beach was right out of a post card. Beautiful Sand and turquoise water ... gorgeous! We even got lucky and got a tour of the Dolphin encounter next door where we met Jack the Dolphin, the 'actor' who played Flipper :)
So and then the next day we went ashore at Castaway Cay, Disney's Private Island. You have to look at the photo's we took to really get a feel for this Island but it is right out of a movie, beautiful and peaceful. In Disney's fashion this is where they keep the Flying Dutchman and this is where Jack Sparrow came out to spend time with the kids and Adults. I have to say that of course everywhere on board and on the Island you could take pictures with some of the Disney Characters but the part I loved the most was the fact that they did not just pose but also talk and interact with the kids. jack Sparrow probably talked for a good 5 minutes with the boys on the Island and later again on the ship!
On Castaway Cay we had some great time swimming, playing and shopping with the boys but it has a special spot in my heart because Thanks to he Disney Club on the Island, Ron and I even got some time for ourselves. We had free bike rentals Thanks again to Disney, and so we took off to the Adult only section on the Island to have a yummy drink at the bar and then take a swim in the crystal clear waters. PURE HEAVEN!
That night at sea we had the Pirates Party on Deck followed by Fireworks. Disney Cruise Line is the only Cruise Line in the world that is authorized to have Fireworks and it showed when we saw that we were trailed by two other ships who might have benefited from the show as well..... :)
As much as I loved both Shore Excursions I so enjoyed the day at sea!!! How great it felt for all four of us to sleep in and then just relax all day playing and going with the flow. The boys finally got to swim in the Mickey Mouse Pool that day and spend some more time in the Kids Clubs.
The only sad part of course was the part of having to leave the ship and we are so grateful to everyone on board who made this trip so special: Witt from Indonesia, Yayan from Thailand and Luca from Italy who were our serves throughout the trip. Once again Brent who was just amazing and also Thank You to a passenger and family we do not know but who was wonderful to us when one of our door Magnets was taken from our door and after hearing about it bought three new magnets and put them on our door. Our Cabin Service Host was so attentive and made the boys smile with his Towel Creations and the use of Ron's Sun Glasses each night.

Now we are Home again and all of us are so full of renewed energy and hope.

I also want to just Hug Lee for taking care of our girls and our house. She is such a help for us and made our home coming so much easier on us!

Connor finished off his trip with a Methrotrexate Shot and unfortunately both him and Alexander also caught a bad head cold. Even thought there was so much precaution on the ship with Disinfectant Wipes and Soaps by the last day a lot of Children were coughing and having runny noses. This was the first time both of the boys were exposed to lots of people in the airport and on the ship for an extended time so I am hoping he will shake it off soon.

Hugs,

R A C A

2 comments:

  1. Great post RACA i love to read this kind of blogs and this one is awesome thanks.

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  2. Thank You for leaving such a nice comment. Our memories about this Cruise go with us everywhere and it has brought so much hope to us. It proofed to me that the mental fight against this disease is as important as the physical fight. Connor is doing wonderful and while we are not in Remission we have the hope that this can be in his future! A simple 'Thank You' was never enough for all you did!

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