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, March 22, 2013

Kaudia ....

Sadly we are now in week four of my Sister In-Law being in the Intensive Care Unit.
Since I posted last she underwent two more surgeries and while she is out of the Coma she in still unresponsive.

We are still super busy working our way through the Fall Semester of 3rd Grade and i am happy to say we are getting more organized now that we know how it is all setup.
The boys will be busy this spring and some summer with participating again at the Landsharks Running Club (this year I signed up Connor as well :).
In late May I have a surprise for the boys as I signed them both up for Ice Skating Lessons :)
Very exciting as i love to Ice Skate and they have been begging me to take them again since last weeks huge success and fun at the St. Patrick's Day Starlight event at the Airforce Academies Field House Ice Skating Fun. I was so proud to see how fast they picked up on it so maybe some of the Russian Blood is indeed coming though :)








Wednesday, March 13, 2013

Carmen & Klaudia Update ...

I am having some good news coming from Germany and some more sad news ...

Carmen is doing well at the Rehab Clinic and she was fairly surprised to see how many people there where around her age. As shocking as this is it is also good news as she told me she has fun being around people her own age...

Klaudia is out of her Coma! They also just removed her feeding tube and the breathing tube. As of now she is finally out of danger and they consider her stable!

Sadly the Mom of one of my childhood friends and a neighbor of ours in Germany just had a Stroke and one of my sisters best friends was just diagnosed with Breast Cancer. So while the circle is moving out of our immediate Family it is still mentally hard to understand what is going on around us....

We here in Colorado are doing great and the boys just started 3rd Grade. We are now on day two and all three of us are getting used to a whole new curriculum setup. All my Guide work is online now as before I had a book to guide the boys. The boys miss their friends from Midlandia but we are very excited to move on :)
Connor is battling a head cold but that is nothing we are worried about and we are loving this beautiful Spring Weather here in Colorado. GORGEOUS!

Hugs,

R A C A

Sunday, March 10, 2013

Switch Day .....

If you have kids do you ever hear how they can't wait to grow up? and how easy they think us Parents have it? We hear this A LOT and no matter how often I tell them to enjoy being kids they just don't believe me.....

Well, last week my husband decided that we should have a Sunday where we switch roles. They boys will be the Parents and we will be the kids :)

Today was the day and it actually started last night with us having to move to the boys rooms and the boys taking over our bedroom. 
We were promptly put to bed at 8 pm and that's when the fun started.... we bugged them each a few times about being thirsty and being hungry and that lasted until about 10 pm. Luckily both Ron and I were able to sneak in our iPads so we were each in one of the boys bedrooms watching Netflix ;)
I also sneaked up twice to get snacks and funnily they never caught me as they were both busy laying in our bed watching TV.

I do have to give them credit that they kept coming down frequently to check on us and when they finally went to bed at 1 am they each came down and gave us kisses on the forehead as they thought as asleep already. I am good at faking this one - lol

The ones that were the most confused about this change up were out cats! They usually sleep in our bed and so last night they both decided to sleep with me in Alexander's bed ... a small bed with two stretched out cats made not for a comfortable sleep for me!
At 8:30 am we were woken up and then the whole fun started. We were served Breakfast which entailed Nutella Bred, Oranges and Parsley for me and scrambled eggs with Ham and Mushrooms for Ron. The boys fed the Cats and Dogs, started a fire (under our supervision) and were shocked how much work it took to cook and get everything on the table at the same time plus the clean up afterwards.
Today also included having to stock up the Firewood and strip our bedding to be washed.
While our 'parents' kept very busy I had fun playing with LEGO in Alexander's room while Ron was reading in Connor's room.
We were then served lunch (Sandwiches) at noon and afterwards I was told I had to work out with 'Mom' Connor. He made me run one mile on the Treadmill, followed by some weights and then a 5K on the Stationary Bike. After this I got to play more LEGO until it was time for Coffee and Cake.
By then the boys had some more work to do with cleaning up the kitchen and pick up around the Living room.
Now they are watching a movie while I got to paint on a canvas and now the only job they have ahead of them is dinner and cleanup.
Funny as Connor has been taking this very seriously and has been working hard but Alexander is complaint about it being soooooo much work and him not getting enough playtime. I can't count on how often they begged me to play LEGO with me - lol

As of now we think we might do this once a month! It is a real eyeopener for them that even on an 'off' day like a Sunday there is still work for Parents....
I on the other hand is having a ball just playing all day (and of course supervising the kitchen adventures).















Hugs,

R A C A

Saturday, March 2, 2013

Great Wolf Lodge with the Tossell Family :)

With all that has been going on in my Family it was a great escape to have had planned a trip to Texas to celebrate C & A's favorite twin boys 9th Birthday :)

We were thrilled to be able to accompany the Tossell Family to the Great Wolf Lodge in Grapevine Texas for one night. 48 hours of pure fun, joy and laughter.
I am not kidding when I tell you that one of the best therapies for me is to watch those four boys, Dylan, Ryan, Connor and Alexander play, laugh and run around together. 9 and 8 years of age and they were still holding hands at times.... Friends now for over 7 years :)

Of course for me it was a huge treat as I got to spend time with my little 'sister' Heidi and her husband David. Great Company, yummy food and snacks plus a very challenging workout for two days in a row made it truly the perfect getaway :)

As in workout I count the close to 8 hours we spend at the Indoor Water Park. All five of us went on pretty much every slide and to walk to the top of the two biggest slides was 110 steps/ We did this over and over again so I add this adventure to my workout goals....

I really hope we can make this a yearly event.






Hugs,

R A C A

Carmen & Klaudia

I have a couple of updates on my sisters and some are good and some are not the best.

Carmen was released two days ago and is as of now at home to wait for her departure to a Rehab-clinic on March 5 :) She is doing well so we are very happy on that front :)

Klaudia on the other hand has us still very worried. As of now she underwent three surgeries. The first one was very intense as they removed parts of the colon that had ruptured and also reattached and fixed her stomach.
The two following surgeries were due to them opening her up again to clean the bacterias in her body due to the ruptured colon and stomach. She is still very unstable so has been in an induced Coma since she was admitted. Sadly her Kidneys are also not doing well and dialysis is a consideration right now.
It really is a day by day waiting game and I am grateful for Skype, phones and e-mail as we are in constant contact with Family.

Thank You all that have checked in and if I hear or find out more I will post.

Hugs,

Anke