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 24, 2010

A busy but good day ....








I am so grateful to my friends who showed concern for Sandy and Naoma Morgan and I want to give you an up-date.

Naoma's Surgery was scheduled for 10 AM and she went back to surgery around 11:45 AM. The boys and I did not arrive at the Hospital until 1:30 PM and by then she was still in surgery. We were able to visit her in Recovery around 2:35 PM and she was moved to her room around 3 PM. The surgery we were told went well and the surgeon had to take parts of her large intestine and also some of her small intestine out. She is categorized at Stage III Colon Cancer and will stay in the Hospital for 5 to 7 days and then we should find out more about future treatments.
I admit I was not sure how the boys would react to see her in the hospital and I have to say they both did wonderful. They charmed the nurses in Recovery and they asked very good questions all around. They both new that Naoma has cancer so they wanted to know as much detail as possible. I admit they looked very happy to hear that it was not the same cancer then Hope had and of course I understood because they remember so well how sad they were when Hope lost her fight against cancer. I told Connor and Alexander that every cancer is different and that we will always hope for the best outcome.
I admit I did not enter the Pikes Peak Regional Hospital with the best feelings considering my past annoyances and just plain anger at this place BUT here I have to say the Nurses we met in Recovery and the ones on the floor were very nice, polite and easy to talk to. So I am still not going to use it for our care but I might soften my stance on how well the actual Hospital works after I can observe more in the next 7 days .... I know I am so critical, but this is a new side effect that came with JDM!
After we left the Hospital we headed home to prepare dinner for Sandy and we arrived at the Morgan's house around 4:45 PM. I admit that I was selfish because I love visiting with Sandy so I brought a movie for the boys to watch in order for me to have some quiet time to sit and visit :)
My question tonight is 'How do you try to help without being pushy and trying to take over someones life?' :) I admit if I was given the chance I would have packed up Sandy and moved him into our home. Of course intellectually I know they have taken care of each other for a long time BUT we the younger generation also see that some help would be beneficial especially when it comes to access to medical care.
Now here is where the Morgan's can be lucky! and I know that sooner or later Sandy will read this and talk to me about the following I am writing :)
If I was there daughter I would most likely move heaven and earth for them to sell their home and have them use that money to move into a beautiful Assisted Living Residence in Colorado Springs. Just the thought to have close medical attention would be my selling point plus of course other convenience's as in not having to drive long distances for shopping and entertainments.
However, I am not their daughter so they are safe in regards to me taking over their life. I will still be a voice in their ear and maybe the seed will plant?

Now my day did start early today at 7 AM. I actually cleaned all four bathrooms and the Kitchen Floor and Hallway. I was done at 10:30 AM, tired but glad I did it. Connor got his Methrotrexate Shot this morning as well and I have to video tape it for you all to see how easy this one procedure is in our home. He sits still for the injection and when it is over he does a belly dance singing 'Shake, Shake, Shake... Shake, Shake, Shake .... Shake that Belly, Shake that Belly!' :) Because I always tell him to wiggle his belly so the Chemo Drug can move around and not sit in one place. Silly but it works and makes him laugh.

Tomorrow is 'No Child Left Inside' Day here in Colorado and it is a lot of fun to get out and join the huge amount of activities that are planned for that day. I had planned to take the boys for a hike but my precious son's did not shrug a bit when I told them that we will instead take Mr. Morgan to the Hospital to see his wife. Connor even said how much he loved his Visitors even if I do not quiet recall it that way because I remember him getting upset when someone showed up while he was watching a movie or playing a game ... maybe this is his way of thinking it is payback time and now bother others in the hospital? :) So here I went from thinking how wonderful caring my boys are to second guessing it all - haha

Wishing all of you a wonderful weekend! Ours will be beautiful tomorrow afternoon when Ron gets home for one day before heading to Chile.

Hugs,

R A C A



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