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, April 23, 2010

Chicago, the Northshore, Lovely Miller Family, Dr. Curran, Dr. Pachman and back Home to see Harlow and Niki :)



It feels a bit intimidating to even start this blog today since I have not just one week to catch up on but a very busy week after all.

This last week on Tuesday, Connor and I left for our trip to Chicago to see Dr. Curran & Dr. Pachman at CMH again. Traveling by myself with Connor and his wheelchair sure brought back some memories to our travels with the twin stroller. You definitely have to plan for more time at security :) I have to tell you however that our experience with TSA was very good overall. The only hiccup was the confiscation of my lotion and Connors Toothpaste. You think I learn from all our previous trips but oh well. Connors assembly of medications however went through without a problem, Thanks to the Doctors note we got from Dr. Soep. Of course it was her Nurse, Michelle that might have done most of the leg work for us and we so appreciate having a contact to Dr. Soep that is that caring and organized.
The next pleasant surprise was our listing for First Class, Thanks to my husband and our son's being 6 years old now and therefor qualifying for F/C on a two class aircraft. Connor did not stop smiling for the whole duration of the flight. It shows it does not matter what your age you still appreciate having room when on an airplane :)

You might remember that we had the luck of having the best roommates while we stayed in Chicago for three weeks in January to February. First we had Henry, who we all adored and who made us laugh. His parents where so wonderful to talk to and this is something that you truly cherish when you spend time on the 4th floor.
After Henry was able to leave for home we got a new room-mate, Grant. I truly consider us extremely lucky that we once again got to share a room with a family that was wonderful in every way. Never would I have said, before this all happened with Connor, that I would connect with someone as fast as we did when we were at CMH. If you had told me that we would come back to Chicago and stay with someone that we had known for just a bit over one week I would have thought you crazy :) However, Connor and I did come back for his Check-Up and took the Miller Family up on their offer to spend the three days we would be there with them. Connor was in pure heaven, too, to spend time at a home that was prepared to handle boys and I even found time to sit back and relax for a time.
We got a very special treat getting a tour of the North Shore and we fell in love with our first experience of a 'real' Chicago Hot Dog at the Superdawg Drive-in. It was the original building build in 1948 and I have to say we loved every bite :)

So Connor had his Check-Up on Wednesday, April 21 at 4 PM. Kim and Grant were Angels to drive us to our Appointment, which took about 3 1/2 hours in the end. When we first arrived we met Dr. Pachman in the hallway and shortly after Erin. It was so wonderful to see Erin who will always have a huge part of our heart for being the most caring and fun person to us but mostly Alexander when we stayed at CMH.
Connor had a very intensive therapy assessment that took almost one hour. Everyone that saw him commented on how much progress he was making and Dr. Curran even joked and asked why I brought Alexander and not Connor to the Appointment. Connor of course was thrilled to hear her say that she thought he looked like Alexander - ha ha
I can't wait to hear what they thought about Connor's progress to tell you the truth. The two girls that looked at Connor used a little stop watch to time him holding up his arms and legs. In one exercise Connor asked how long he had to hold out his arms and she replied '2 minutes'. When he dropped his arms she told him he did a wonderful job so he asked how long he was able to hold them up and she replied '18 seconds'. Connor was all smiles as was I since those 18 seconds are a huge accomplishment! The sad news however for Connor was a 'NO GO' on the Trampoline. We might even have to consider the swing. The therapist said that for children with JDM and Connor the Neck Muscles are to weak for attempt this. She also asked about his home therapy and she things that he is being pushed to hard at this point and that we will have to scale back on what he should do at this point. She mentioned that if he shows signs of tiring during his sessions and if he is sore the next day then they are to hard for him. Both of those have been true since we got home. He usually tires about 30 minutes into the therapy and always is stiff the following day.

There was also another assessment by Dr. Curran and Dr. Pachman and to finish the appointment he had 10 + vials of blood taken again. This was the first time he truly cried when his port was accessed and he cried again when we had his port accessed once again yesterday at home for his Solumedrol and Methrotrexate plus blood work for Dr. Soep. I left a message with Dr. Soep's nurse to see what could be causing his port to hurt .......

We ended our night with a Chipotle Dinner and another nice tour of Chicago :)
THANK YOU to the whole Miller Family for being such gracious hosts and making this stay so pleasant for the tow of us!!!!!

We came back home on Thursday, to Connor's disappointment not in First Class but at the Bulkhead :) I so want to Thank TSA, the AA Gate Agents and the In flight Crew for being truly wonderful to Connor and I. Very helpful and considered every step of the way! We had a female First Officer on this flight and when we got to the Gate in Denver she went down stairs to get Connor's Wheel Chair and then helped me with my bags up the Jet Bridge. We are always so quick to complain when the service is not so good so I want to take those few words to say that my whole Airport and Flight experience was a wonderful one this time around :)

Now it is Saturday and we are HOME. The best part of ending our trip was my beautiful step daughter Niki arriving in Denver with my equally beautiful and gorgeous 10 week old Grand daughter Harlow. Those of you that follow my Blog have already read the countdown to her birth and I can tell you it is the most wonderful therapy for all of us to be surrounded by family we love so much and to be able to hold a Baby that is so pure and just starting her journey and adventure of Life.

I am sure I forget allot about what happened this last week but I am just skimming the surface now so I can get something out on the Blog :)
Connor did get scheduled to come back to Chicago next month on May 19th.....

Thank you for traveling along with me through your e-mails and FB messages! Sorry I have been a no show this last few weeks BUT I do read them all and love the comfort they bring me :)

HUGS!

R A C A



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