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

Tuesday, May 17, 2011

School, Appointments and JDM

I could say I am not sure why JDM is the front runner on this weeks Blog Postings but I do know. For one it has been a subject in our home this week and for the other we are still all worried about the children from our extended JDM Families that are in the Hospital tonight.

Connor and Alexander had their DIEBLES Reading Test today and we are so grateful to Gateway Elementary and Miss Eve for being so wonderful in trying to work with the boys and I when it comes to trying to get caught up with their Grade Level. It is Thanks for LL Online and Mrs. Strubles wonderful Cottage School that we will be able to keep working through the summer online school and hopefully catch up to where we should be when the new school year 2011/2012 starts up.
I am happy to say that both Connor and Alexander showed progress from their last DIEBLES Test but they are still not where they should be.
This is were we are not making an excuse but I am trying to make people understand how challenging is to have your kids have the same benefits of time go into school when you are dealing with a schedule that is packed at times with Doctor Visits, Therapy, Infusions for one of your kids and then trying to balance a normal life for your other child.
Remember my blog about how I would like my favorite week to look like? I posted it a few blogs ago and called it Groundhog Day after the movie. Well, lets take last week. We left our home on Tuesday and did not return home until Friday due to the Chicago Trip and Connor's Check-up at CMH. Yes, I always thought when you Homeschool you can take your school on the road but everyone of you that travels a lot knows how tiring it is and you also want to balance the stress of going to see Doctors 'again' and having Blood taken 'again' with some fun. I still have the believe that traveling to places is an education as well and by seeing a place through the eyes of friends living there is an added bonus. Never less you miss out on sit down school work.
This week we are on the go four days out of five! We started with Infusions on Monday, we had the Reading test followed by a Pediatrician Appointment for Alexander today, tomorrow the boys have their end of year Pizza party plus the State Report with Mrs. Strubbles Class and on Thursday we are back in the car for Connor's Hippo Therapy. Now if you live in the City that might all be easily managed but for us to drive to C-Springs takes 1 hour and 15 minutes one way. So it is time consuming.
One of the reasons I wanted to post about this was due to a conversation I had this morning with a fellow JDM Family member how it is hard for our kids to keep up in school. We are, as I said before, lucky to have amazing support here in our School District but I still want it to be known that it is a challenge for many families and kids dealing with a disease that does need a lot of medical attention.
One thing that is easily overlooked and not acknowledges is the fact that the drugs your kids takes also impact how focused they are at times or what mood they might be in. STEROIDS can throw you for a loop at any time a day. We are once again lucky that Connor is now tapering down drastically on the Steroids and it shows. He is more focused again and he picked up great speed when it comes to reading, which is such a joy for me. I am truly a very proud Mom :)
Alexander, my baby boy does not take easily to reading and he of course gets more anxious when testing times come around. I wish for his sake that kids would also get tested in Math the way they test reading skills. I only say this because I know he would shine in a huge way and leave others way behind. When it comes to Math he is my little whizz kid. Today he did a page on Fractions without me even explaining it to him. He answered every challenge and there was not one mistake. Once again I am very proud of him!

My babies are now in bed and are excited for tomorrows State Report about New York and of course the following Pizza Party.
I am looking forward to having my husband home again tomorrow. He has been flying Anchorage Trips all month and has been enjoying seeing Niki, Alexander and Harlow during his layovers.
We might be getting a chance next week to head up for a 24 hour layover and  as always when we talk about the challenges of keeping a schedule I take also comfort that our crazy lifestyle teaches the boys an exposure to life that they would not get if we did have a so called 'normal' life. I think they can beat many of the Business Travelers when it comes to Airlines Miles they have flown, people they have met and foods and cultures they have experienced in their 7 years. It all has to pay of somewhere, right? :)

Goodnight my precious friends and family!





Hugs,

R A C A


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