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

Friday, September 30, 2011

Chicago Trip & CMH Check-Up on Sep 28, 2011

As I mentioned in my last entry, Connor and I headed to Chicago for his Check-Up this week and we left early Tuesday morning on Sep 27, 2011 and we returned Thursday afternoon Sep 29, 2011. We arrived just a bit after Noon on Tuesday and were met at the Airport by our favorite and most wonderful Host Family, the Millers :) Kim and Grant had just finished their own Hospital Appointments so that we all relaxed over some yummy Sushi and a bit of Toy Shopping before picking up Evan from school. It truly is such a pleasure to be around friends when your trip is usually all about Doctor Visits, but whenever we get to stay with the Miller Family, Connor forgets all about the reason of this trip and thinks we are on vacation :)

On this trip we got to have a unique shopping experience at a very cute Toy Store, ride Bikes and Scooters to downtown Glencoe to pick up some very yummy sandwiches for Dinner, we got to play on the beach and Playground and eat at the wonderful Austrian Bakery, Molly's Cup Cakes and of course the traditional Super Dawg. While Connor had some very fun play times with Evan and Grant, I on the other hand had a most wonderful time talking to Kim and her precious Mom Ervil. I can not express enough how much we adore them all!

Now on to Connor and the purpose of this trip. When we landed at ORD I found a message on my phone from CMH to ask me if Connor could come in early the next morning for some labs while he was fasting and then come back for his scheduled Appointment with Dr. Curran at 1 PM. As always Kim must be the most flexible person around because she said it was no issue for her to take us but if he could have his labs at the Clark Street Outpatient Center as Grant had a Dentist Appointment there later on. We woke up early and headed out and the only hiccup for Connor came when he realized he was getting labs taken from his arm and not his port and then he needed two pokes (one in each arm) as there were so many tubes to be filled and his blood flow stopped just one tube short. It was very touching to see Grant being at Connor's side coaching him through all his distress! What was also wonderful was meeting another JM Family, Mary Strep, her daughter and beautiful Madeleine! I throws me each and every time how fast you connect with people you have never met but who are fighting the same battle. You feel as if you were entering a country and find out there are others that speak your language and dialect perfectly. It was heartbreaking sharing our stories but also to celebrate the love we have for CMH, Dr. Pachman and Dr. Curran!
We then, after our marvelous late breakfast and some delicious cup cakes, headed over to CMH for our Appointment with Dr. Curran and some more conversations with the Strep Family. Kim and Grant took the time to explore the Chicago History Museum :)
All in all our visit with Dr. Curran was a huge success! His blood levels looked great! even the insulin levels who we were worried about were good! The only level that was off again was his Cholesterol being high. We are not sure why this is. The discoloration on Connor's neck turned out to be Terra Firma-Forme Dermatosis and was easily taken care of with an Alcohol Wipe :)
Connor's strength test went very well and we finished our trip with an x-ray of Connor's Spine to rule out any fractures. Connor's Bone Density Test still showed him way below the average and so he did have to make the concession of playing on the Trampoline. After this he sure did not brave his normal question of going on a Roller Coaster but in the big picture we are NOT complaining :)

We arrived back home yesterday around noon for lunch and a looooonnng nap for Mommy. After all we had a 3:10 wake up (Mountain Time) and I need my sleep ;)

I am very Thankful to my husband, my Mom and Dad who kept Alexander in his routine at home! Alexander, I was told did wonderful at school and Cub Scouts, which his Dad was a teacher this time and he loved being clued to his Dad for the duration of the last two days. It was funny coming home and seeing my nightstand littered with his Water Glass and reading books :)

Thank You to all of you who have been sending messages and kept checking in with Connor and I on our trip. Thank You to the Miller family for once again providing lots of distraction and fun for us!



There are some other news as well and that is that my feet are feeling much better... and the very heartbreaking news for our family came yesterday night in a phone call that our brother In-Law Ron was given only 3 to 4 weeks to live. In addition to his Lung Cancer he is also having a sever attack from his Leukemia. Two battles with no chance of winning...

Hugs,

R A C A

1 comment:

  1. I am so glad that you had a wonderful visit with Kim and family, as well as Mary and family. I am very happy to hear that Connor's check up went so well. Tell him I am sure Dominic can sympathize with him. He has never been allowed on any climbers, or rides that will jar his back since diagnosis. One day, there bones will be strong again and they will be able to do all the things they want. At least they are both doing well.

    Love and hugs to all of you,
    Susan

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