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, January 8, 2011

Chicago, CHM and Dr. Curran and some day to day events :)


































So we are back from Chicago and I have to say it was a very good trip for the boys and I. All went extremly smooth on all the flights and once again I am going to brag about AA. On every flight we were allowed to pre-board, and on each flight we got my favorite row ... 8 D, E & F. I am not a fan of the bulkhead because I have no storage room during take-off and landing so I was grateful to get row 8 instead of row 7. We did get one flight in First Class and we shared it with about 10 Air Force Men and the boys LOVED it. They were all so nice and talked to Connor and Alexander for most of the flight.

Once we got to ORD we had an easy time to get our Car Rental and I had booked an SUV due to the Wheel Chair and the worry about possible snow but was told they upgraded us to a 'Mini Van'. Well, being an SUV Girl I was not so sure what they mend with upgrade but after seeing how much room it had and how easy it was to store the Wheel Chair and luggage I was more then impressed :) Don't get me wrong, I am not trading in my Baby but I can see now the benefits of those Mini Van's - haha

I also want to point out again that TSA did a wonderful job with Connor and asked me each time if I prefer a private room for his touch down and since I told them this was not necesarry they asked me to watch them closely so there were no concerns. Connor of course was a trouper and knew exactly what was expected and it became kind of a game where Alexander even asked to be patted down. I used to be very critical but have to say that thanks to some knowledge now about what is happening still on our fight against terorrism I am grateful to see Employees that do a great job and are friendly and courtious while doing it. So a shout out to COS and ORD TSA!!!

Chicago itself was marvelous. The boys asked to have a Chicago Hot Dog the first night there and we found this most fun local place called 'Flub A Dub Chubs Hot Dog' ... HEAVEN! If you know me well then you know that I believe Heaven is found in great company, great friends, an amazing family and FOOD. So I promise you heaven was right here on Earth with us on our Eating Experiences in Chicago. The next night we ate at Eduardo's and had Pizza who was scrumptious :)

CMH was also as remarkable as we remembered. The three of us had a really touching time traveling down memory lane while visiting the 9th floor, 4th floor and cafeteria. It is so hard to believe it has been almost one year since we spend three weeks there and how touching it was to hug and talk to the nurses we had back then and also one of the Janitors and one of my favorite Cafeteria Workers. We even were so lucky to see Erin and Pete who were our Angels while at CMH and who took care of Alexander and took him for outings several times last year. It was sad but heart warming remembering Hope and her precious family and what an impact they have made in our life this past year. We remembered the laughts we had with Henry, Connor's first Roommate and then of course Grant, and the most amazing friendship that came out of this for the boys with both Grant and Evan but also for me with Kim who is like a sister to me now.
As to the actual Check-Up with Dr. Curran we got good news. She is in agreement with Dr. Soep about Connor's improvemnst and we will continue to tapper off the Prednisone as we started and while we were unable to make a true assesment with Therapy about Connor's improvemnts in strength, due to him being in casts, the overall impression she got was that he looks like back to 'normal' (who in my family is that? - haha). This was all around great news. The interesting part about CMH is also the fact that we left with about 3 suitcases full of toys that were given to the boys during our three week stay last year and within 10 seconds of entering the building on Jan 6, 2011, the boys had toys in their hands 'Thanks' to the Three Kings Day. Trust me I had not planned on packing two remote controled cars in my rollerbag but I guess since one was a Ferrari we made an exception ;)

Well we are now home again and we will be returning to CMH on May 12th. This time I am hoping Ron can join us and we can add a day or two to it and visit with the Fuller Family as well.

Coming Home was so good and even thought our boys slept like Angels while in Chicago (the first night they slept for 12 hours! from 7:30 PM until 7:30 AM), it is still the best to be able to go to bed in your own home. Ron picked us up and unfortunetly we only had last night and this morning with Ron before he had to leave again for his next trip, but some time as a whole family spend together is better then none.

Tonight I like for you to remember a fellow JDM family who shockingly not only have a child that is dealing with JDM and the challenges that comes with that but also just lost a husband and father to cancer on January 3rd. I can not imagine the pain that comes from this .... I thought nothing would shock me anymore but then there is always something else that comes up that takes your breath away and makes you sit down and think.

Hugs,

R A C A


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