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, July 9, 2010

Chicago Trip #2 Up-Date :)






All in all the news we got from Connor's Check-Up Appointment at CMH was really good! :)
We arrived at the Children's Memorial Hospital in Chicago at 1 PM on Wednesday and were moved to a room straight away. The best news came from Connor's Therapy assessment which had a score of 26 two month ago and this time around he improved by 19 points!!!!! the goal I was told is 52 and he got a score of 45!!!!!
This really was amazing even to the girl taking the score and as of now we really need to add attention to his feet. We also got the most wonderful green light from Dr. Pachman about the Hippo Therapy that Connor would love to be part off. So now Dr. Soep will fax the release form to Memorial in Colorado Springs and if all goes well Connor could be in the program as soon as this fall :) Connor of course was star truck again by seeing Dr. Curran even thought he tried hard to not let it show :)
Another highlight was seeing Erin again who took Connor's finger nail pictures and all looked good on this end as well. We got to see Jacque for about 2 minutes and I got to put a beautiful face to a name I have seen on the CureJM board but also on my blog 'Robin' :) It was so precious to me to meet her son Ryan even if it was just for a couple of minutes and I am sad that Connor missed out on spending some time with him. It still amazes me that you can meet strangers and feel a bond and connection within a heartbeat! So I will say it again but the JDM Family we are a part of is something I am glad we get to experience in every way.

There were two big heartaches about our visit to CHM. One came in the form of Connor's blood draw through his port. He always has to give quiet a few vials of blood and we came prepared in the form of EMLA Cream on his Port. The 'first' Butterfly Needle went in fine and Connor's Nurse was able to take about 6 vials and vola the line got clotted :( This was bad news for Connor who already is very anxious before each 'poky' but this time having to face a second poke within a few minutes was almost to hard to take. So the good Mommy I am I figured I take his mind off the needles and have him focus with me on the World Cup game between Germany and Spain. In retrospect this might not have been a wise decision since just when the needle went in the game finished 0:1 for Spain. Connor was crying and sobbing so badly and the nurse kept saying 'I am so so sorry for having to do this twice' that Connor ended up snapping at her 'I am not crying because of the Blood Draw but Germany just lost' what a little fan I have :) I can gladly report that he felt better by the time the needle came back out and he was greatly rewarded after the Hospital visit from a stop at 'I Cream' where Miss Kim and Evan took us to.

This brings me to my second part of this blog. We have been to Chicago twice now since the Hospital release and each time 'Thanks' to Kim we have been experiencing some of Chicago's history in food. We twice had the treat of 'Hot Dawgs' which was established 1944 and each time we ate at the original 'Hot Dawgs Place' :). Then we also got to enjoy some original Deep Stuffed Pizza but I forgot the name of the Restaurant now, never less it was YUMMY but you truly can eat only one slice and you are full :) and then there was 'I CREAM' ... what can I say about a place that makes your very own ice cream right in front of you? You get to pick the flavor, the color and your toppings and then they pour everything into a mixer from which your ice cream will be served to you within a couple of minutes. Connor had Yellow White Chocolate with Butterfingers and Banana toppings and I had Hazelnut and no color but Nutela and Banana Toppings .. yummy, yummy, yummy :)

We also got to stay with the Miller family again on this trip due to Ron's change in schedule and the generosity of Kim & Family to take us in. Connor and Alexander were so happy to be able to spend time with Grant and Evan and I had some wonderful Girl Time with Kim and her Mom Ervil :) On Wednesday morning we had a really fun outing to the Botanical Gardens to see the Miniature Train Exhibit and the boys loved seeing Mount St. Helen's erupt :) and in the afternoon while Kim, Grant, Connor and I headed to CMH Alexander stayed behind with Evan and Ervil who told me she would not mind watching him. Well, I just hope she had enough time to recover from that event since anyone that had babysat Alexander before knows very well that you hardly get a break - haha

It is hard to put three days into one blog post and I hope I did it justice. Our home coming was wonderful even if the temperature read 48'F. We arrived driving through Hail, Rain, Thunder and Lightning but the best part of all of course was seeing Ron again after 7 days. Tomorrow we are leaving for our summer getaway vacation and all four of us are so looking forward to it.

Wishing all of you a wonderful and peaceful weekend :)

Hugs,

R A C A

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