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

Wednesday, February 10, 2010

Day 14 at CMH

My today I find time to add a post before 9 PM - haha

First off all Niki's water broke this morning and she is now in the hospital getting ready to have her sweet, sweet daughter and our beautiful Granddaughter. So we are counting on being an Oma & Opa before the day is over!!!

Who ever said that every day here is the same as before? We get to experience something new each day and i am sure this is done so we are not falling into a pattern and get bored :)

Connor spend the night with Ron again and he did a fair amount of coughing again throughout the night and also got sick at 4 AM this morning (with incidentaly also was the exact time Chicago had an earthquake last night). The throw up was clear and yellow and then he repeated that again around 9:30 AM this morning.

Well, Alexander, Connor and I were upstairs on the 5th floor for Story Time with Dot (who is amazing and keeps the kids laughing none stop for 30 min). We were just leaving when Ron came down to tell us that Connor needed to get two tests done and that he will be moved into isolation for at least 24 hours. The first test result will come back fast but the other will take 24 hours for the results to come back. I am not sure what they are looking for right now and so far Connor is taking it all in stride and the only upset for him right now is that he will not be able to visit Hope today.

More updates later and I am back to feeding Connor chocolate Pudding. He is also back on only soft foods for now.....

Okay I am back. We are in a semi isolation right now. We are still in the same room with our roommate as well but now they put a sign on the door that reads 'Isolation STOP' and in order to enter our room you have to wear a gown, gloves and face mask. The nurses and doctors alike.

Dr. Miller told us earlier we will look for a release date Tuesday next week, and we just had a visit from Dr. Pachman who told us we should look at a release for mid next week. They also want Connor to take a Care Flight home or if we can set it up have a medic go on a commercial with us. The worry is is lungs and oxygen and they want it to be monitored while flying him to Denver.

They still are not set on what doses of steroids he will get in the long term and Dr. Pachman agrees with us that having a Port in the long run will be the goal for us.

No up-dates on Niki yet only that she is ready to have her :)

So it is now 9:40 PM and Ron has not got a answer to any txt in about 1 hour or more so we are positive our 'Baby' is having a baby maybe while I am writing this!!!! So much of our thoughts are directed towards Niki now and it is great to have something so wonderful happening while we are surrounded by so much uncertainty here....

Connor and his room mate are now on isolation but we were lucky they kept us all together and that neither of us had to move...

The first test result came back negative and now we have to wait on the second test result. When it comes back negative we will all be allowed to leave the room again and even visit the parents lounge again so we can socialize with Hopes family once again, too :)

So nothing else really happened but as I said no day spend here at CMH is like the other. We all are so lucky to share our room with a family we really like!!!

Okay... another up-date: It is 2:19 AM here and no baby yet! Niki's doctor does not know why she is not coming yet and now told Niki she should try to take a nap... so her BD might be
2-11-2010 :)

Hugs,
R A C A

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