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, May 14, 2011

Chicago Trip & CMH Check-Up on May 12, 2011

Oh how fast this week went by but how fun it was considering we had to say Goodbye to my parents first and then go for a Doctor's Check-Up in Chicago.
We had a tearful goodbye for my Parents on Tuesday the 10th and it was as difficult as it is each time they leave. Connor, who had gotten his Methrotrexate Shot in the am was especially emotional and cried almost the whole time in the airport. Luckily the boys mood lightened again when we arrived at our Hotel in Denver that night and saw the cutest little bunny rabbit sitting there within 2 feet of us without a care in the world. We saw him a total of four times during our one night stay, very precious :)

We got to Chicago without a hitch and were spoiled by getting seats in First Class. The benefits of working for AA! We truly hit the floor running once we arrived at ORD. We spend about 15 minutes at the Hotel before Kim picked us up for a day of fun. I have to say it is a dream being friends with someone that also has two boys and completely understands their needs and wants. At first she took care of their hungry tummies by taking us back to 'Super Dawgs' for our much loved Chicago Hot Dogs, we then got to have some fun playtime at a playground close to her home. The boys had the biggest smiles seeing Grant and Evan join them. The weather on the other hand was crazy. We arrived in hot and humid weather after hearing that we got about 6 inches of Snow at home in Colorado. While at the playground it started to rain and cool down quiet a bit. We were suppose to watch Kim's boys play Baseball but that was cancelled due to lightning. We ended up having some downtime at their home before heading out for a yummy Burger and Shakes Dinner at 'Meatheads'. The crown to the end of the day came by a trip to Nickel City. It was so great to see them all laugh and have a fun time while I was impressed at how clean they kept the arcade games.
If you can't imagine how tired my dumplings were when we got to the Hotel again, I can tell you that it only took them 10 minutes to get undressed, brush teeth and fall asleep :)

The next morning we slept in and each of the boys took a shower that lasted about 20 minutes. I actually took a sound video of Connor singing how he never wants to get out of the shower. I feel a bit guilty about the water usage but gosh my boys love to shower when we are staying in Hotels.
We then rented a car and made it to the Hospital for the 1 pm appointment with Dr. Curran. The appointment over all went very well. Dr. Curran was impressed with what she was seeing and she said that it looks like the tapering is a success. Of course she also wants to see the Blood Test results from the labs they were taking that day. She also responded to Connor's begging about playing on the Trampoline and going on Roller Coasters with a request of a new Bone Density Test. We will have that done at home in Denver and she told Connor that she will give him a response when she sees those test results. Can you imagine that Connor wants this test done asap? ;)
Surprisingly we were done with the Appointment by about 2:45 pm! before we were able to leave however we had to have Connor's labs taken and that was the only speed bump on the road that day. We put the EMLA cream on his port with plenty of time to work but when we showed up at the lab they told us they would have to take it from his arm. Connor was very upset about this and he cried the whole time saying it hurt to much. Now this all came after he also had asked Dr. Curran when his port can come out so he could play contact sports. I asked him if he still wants the port out after the experience in the Lab and he said 'No Way!'.
We had planned to meet Candy for Dinner that day right after our Hospital Check-up but since we were so early we decided to head to Lincoln Park for the Zoo. We ended up at the Farm Zoo followed with a drive along the Lake Shore Drive. It was a very beautiful sunny and warm day. At around 5:15 pm we found our way to Candy's home and from there went to a playground in her neighborhood.
This was the moment when the boys and I encountered a strange meeting on Melrose Road. We had just left Candy's Apartment to walk down the block when this guy yelled at me "Charlie Sheen's Ex!!!! Stop, stop!" the boys and I paused and he came running saying his heart was beating a mile a minute because he though I was Denise Richards with her two children. Hello! for one I look nothing like her at all, for another they have girls if I remember right and NOT 7 year old twin boys!. So I said in a nice way that I am sorry to disappoint him but that it was not us. He then laughed and ran on the middle of the road yelling "Hello everyone!!! We have Denise Richards in our Neighborhood". Needless to say the boys and I picked up speed and distanced ourselves from him :)
Candy met us a short time later at the Melrose Diner which was pure heaven. The food was great and being able to sit outdoors watching people walk by was so relaxing. At times it felt as if we were in a movie, a small neighborhood feel in a large City. We got to meet two of Candy's neighbors as well and I have to say a special 'Thank You' to Joe who helped guide me in a parking space on Melrose Road.
The perfect finish to the day was a visit to the roof top on top of Candy's home and seeing parts of the Lake and the high rises around us. End this with a beautiful Sunset and it was truly the perfect ending to our trip to Chicago.

We ended up with a 3:30 am wake up call the next day and as painful as it was we were all in high spirits because we were heading home to beautiful Colorado. I love that we have the options to have the beauty of home, the mountains and peaceful quiet but also that the boys get a taste and feel of City Life, which I also love and cherish.

We arrived at home at 11 am and it was so good seeing Ron again after a week and then being able to sit out on the back deck for Coffee and Cake and also for Dinner with a glass of wine..

If I have not said so lately I really do love and appreciate my life. Yes, there are always challenges but that is the normal for everyone.







So THANK YOU Miller Family and Candy for making a trip that could be just a pain in regards to traveling and Doctor Visits to a trip that felt like a vacation. I am so lucky to have amazing friends that take time out of their day to make our days special.
Love!

Hugs!

R A C A

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