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

Monday, November 7, 2011

Aftermath of IVIG ....

As to JDM news it was a very rough two days for Connor following his Infusion Day. He dealt with a low grade fever ranging from 99.8'F to 100.2'F, which would have been not so bad but he also dealt with some raging headaches that kept him crying. He felt better came Sunday and our oh so cherished day off. I think the culprit was due again to the faster infusion speed. So Sunday went well but today Connor was battling some Attitude behaviors and also a very low tolerance when trying to control his frustrations. He is very lucky that the person his frustrations aim at is taking it in stride and more or less ignores his older brother. So while C was a challenge most of the day, A was the polar opposite today as in being focused and attentive. If C was still on high doses of Steroids I would point my finger there but we are down to o.5 ml a day so hardly worth mentioning it. So possibly this is just a normal growing pain and he will be my little Angel again tomorrow while A gives us a run for the money ;)

The boys loved making Lantern's at the German School on Saturday and are very excited about the Sankt Martin's Parade on Friday night. I was happy I talked myself into taking a run while the boys were in school and enjoyed the beautiful trails and scenery at the Garden of the Gods. It was a cool morning so I did add some calories afterwards of having a Hot Chocolate at Starbucks to warm up.

Today I have been not felling well and have to Thank my husband for letting me take a long nap again and also him taking care of the boys and I for lunch and dinner. I am so so so grateful to be able to stay low today as this week will have us on the go everyday from morning to night until Sunday. Just thinking about it makes me tired but then on the flip side your brain has all those thoughts and ideas to plan and one might wonder when good sleep will be a part of our life again. I admit I belong now to the couple of Million of woman (according to ABC World News) that take sleep aids daily, in my case Ambien or Stillnox is my drug of choosing;) Those little pills keep me sane for the night because without them I sit up for up to 4 hours thinking of all the worst scenarios that could happen to all of us and how unprepared I feel. Once 7 am comes around all looks bright and clear again so I am saved again for another 13 hours before I feel the need to worry ;)

Today we are sending some thoughts to a friend of a friends daughter (Chandler) who is going in for some sever and intense surgery. This is very scary I am sure for a little girl but also so heartbreaking for her Mom and Family. Connor and Alexander's favorite older friend Grant is also scheduled for an MRI on the brain to look for a tumor and this has been on our dumplings minds daily. This exclusive club you are part of ... no worry that your best friend might move away to another State where you are still able to Skype, txt or FB ... no the friends you make on the Oncology and Infusion Floors may be faced with a different move and one that makes keeping in touch a lot harder. So my sweet Alexander, after hearing about Grants MRI started crying and saying he does not want to loose his best friend. So our conversations in the car are not about music or school events but about different kind of tumors and different types of treatment options. You 7 year olds are learning about Statistics which you as the Parents hope more then anything that your child will be the exception.

I am in complete awe at the exposures my son's are having when it comes to diseases and battles kids are fighting all around us. I am convinced this imprint will make then the people they will be when they are Adults. Connor and Alexander told me frequently that they want to adopt children when they are ready to have kids, they also tell me frequently that they love the fact we as parents don't push our believes on them and that they can speak their mind freely even if it is not the path we would choose. So no surprise for me but some other people present during Theater Class to hear my youngest speak up loud and clear that he does not believe in Jesus or God (Yes, he is playing in a Christmas Play and wants to participate). The director asked me if this would be an issue and I answered no, Alexander loves acting and he is playing a role so she will get his best focus. The part that touched my heart the most was later on when we were finishing up and Alexander looked at me and said "Thank You Mommy for letting me have my own opinion". He is as proud as me, as confidence and as outspoken and I still think he will rule the world someday if he would just focus on learning to read and write - haha

Wishing you all a pleasant week ahead ... and no more Earthquakes for my OK Family!!!
and below here are some pictures I took during my jog through the Garden of the Gods ... I am sure hoping all the Rattlesnakes know it is time to hibernate right now!





Hugs,

R A C A

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