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

Sunday, March 25, 2012

Chicago Trip and Checkup :)

Oh what a fun, busy and crazy week we had!

Connor was scheduled for his checkup at CMH for the 21st of March but this time around Alexander also was asked to come for his yearly checkup for the Twin Research Study.

The Appointment went very well and Alexander, my brave little soul, volunteered to go first for the blood draw. He was amazing and so composed. He kept saying through the whole experience how it did not hurt at all. He was of course doing this to calm down Connor who does not do well when it comes to blood draws from his arm. Connor went next and got upset right away when he saw how many tubes of blood he had to give. Thank goodness for the wonderful nurse who had the patience of an Angel :) It took some tears from Connor but never less he got it done and they were both thrilled to have the worst part behind them and of course be handed an envelope with $25 in it for each of them :)
Everything else went very well and Dr. Curran agreed that we can start talking about more tapering. Our hope is to get rid of the Steroids completely :) as I agree with my precious friend Kim that we believe Connor's sweet personality will make a complete appearance again once the horrid steroids are gone.
The only set back was the PT assessment and I admit we saw that one coming. Connors feet and leg muscles are getting to be tight again and we are now faced with him needing to wear his braces again at night. We will also get a new prescription to get new braces fitted.

Now on to the highlights of this trip :) I had a most wonderful phone conversation on my birthday with my cousin Birgit in Germany. She pointed out how she had lots of surgeries as a child but how her Mom always new how to make each trip to the City for another surgery fun in regards to outings and things they did to distract. Even today, many years later she told me she only remembers the fun she had with her Mom.
So true by this we had a blast during the time we were not in the Hospital or at Doctor Appointments. This of course was all Thanks to the Miller Family who spoiled us in taking us places we would not usually see on our trips to Chicago.

The first day we arrived Kim took the boys to a neighborhood park to run and play and burn of some energy after getting up at 2 am, sitting in a car for 2 1/2 hours and the another 2 1/2 hours sitting in an airplane. How I love spending time with friends that understand and get the need kids have!!!
After we got back home Monica and her son Connor arrived and this was one treat I was looking for the most. Monica has been a most wonderful friend on Facebook and her knowledge and wisdom has helped me numerous times. So meeting her in person was just amazing and so much fun. Once Evan and Grant got home from school we had 5 active boys playing together and the highlight for my two dumplings was the part of all of them playing Baseball outside. Have I mentioned yet that it was HOT while we were in Chicago? 80'F the first day and 86'F the second. Way to warm for this Colorado girl - haha
Us girls got spoiled on yummy cookies and cup cakes (I do thing Chicago has a hold on some of the best cup cake bakeries!!!). We ended the day with a trip to another playground where the kids got to play on Scooters and play Basketball and then us heading home and filling up on Tacos :)
The next day we went to tour the Jelly Belly Factory in Wisconsin before the Hospital Appointment and after we were finished at the Hospital we headed to Ed Debevics for an early Dinner. It was so much fun that even Connor was dancing with the waiters :) The ending of the day came with a tour of Millennium Park and a trip around Soldiers Field. Alexander was on cloud nine!!!
On our third and last day we started with a trip to the Hospital for Grant and Evan who each had appointments. After we were finished there we headed to the LEGO Discovery Zone for some more playtime before the Miller Family dropped us off at ORD for our flight home. The flight went well and we arrived home at 11 pm. Tired but happy.

Thank You so much to the whole Miller and Forss Families for this wonderful experience once again. Thank You to Kim's Mom, Ervil, who has a heart of gold and always makes me feel like family when we come to Chicago! It is do to all of you that my dumplings think all our trips to Chicago are a vacation and not the true reason why we travel there.

One little bittersweet moment was the fact that this was the last time we stepped foot into the old Children's Memorial Hospital. They are all moving to the new building downtown this summer and our Doctor Curran will also have Clinic at another building in Lincoln Park. It is sad for us as we loved this place for all it has done for Connor and us. Of course we know it is just a building and the hearts of the Employees of course will move to the new Hospital.











Now we are getting prepared for our next adventure to Texas. No rest for us as we love being gypsies and being on the go :)

Hugs,

R A C A




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