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, November 30, 2012

Stubborn Asthmatic Bronchitis :(

So I am now on Day 8 of my starting battle with AB and as much as I tried to will my brain to fight this on our own I had to concede the battle on Tuesday when I did go in to see the doctor.
I just finished round one of Antibiotics and will start round two tomorrow.
This time around I admit that my lungs are successfully ruling my body. I feel as if my whole body is bruised, my breathing is very shallow and the tightening of my airways due to swollen Lymph notes wakes me up about 20 times during the night.

This brings me to the challenge of trying to run a home while this sick. In the old days when I had no family I would have curled up in bed and just slept it off ... Not so when you are taking care of two boys and a husband, who is trying to help me out as best as he can! He is my backup during school hours as my patience and endurance are almost non existent but we can't fall behind so have to push on.
On the day I felt sick the most I was faced with a long day of taking Connor to three Doctor Appointments. The driving part was a nightmare as was sitting in full waiting rooms.

I so hope to shake this and get on top of this before Monday as next week will be very very busy..

So wish me luck!

RACA

Monday, November 26, 2012

Head Colds all around ....

Oh the joy of passing on head colds ...
It seems we are now battling head colds on and off for a month!

The boys started up about three to four weeks ago and then were in the clear only to wait for Ron's turn who had to deal with it while being on call. I was so sure I was in the clear until Thanksgiving Day came around and I felt that oh so familiar burning in my lungs.
Each and very year I am convinced I can ride it out and it seems each year I end up at the Doctor. This year I am still hoping I can keep this contained enough as the irony is that I dislike nothing more in my life then having to go and see a Doctor! That coming from a Mom who drags her poor son's to Doctors all the time and preaches how important their checkups, and in Connor's case his Therapies, are for them.

So the joy of teaching your kids: Do as I say but not as I do!
I know I know it is a horrid habit but one I think most of us parents are battling with - haha

As to our home life we are thrilled to be in the Christmas Season. Our favorite Season of the year and how I love love love the magic and joy that still is in my dumplings about this Holiday. I know my time is limited as at age 8 there are not many years left when that magic disappears to some degree, but for now we are still baking away, preparing Reindeer Food and setting up the Elf to watch over them.
Christmas letters are done and waiting to be mailed as are most of our Christmas Cards :)

Happy Holiday Season to you all! and may those wicked colds stay away from you :)

Hugs,

R A C A

Thursday, November 22, 2012

Tossell Family Visit :):):)

The last week was pure fun for my two Dumplings and myself who loved having the Tossell Family here in Colorado :)

Last Saturday we were lucky to have them at the house for lunch and Coffee and Cake so Ron was able to visit as well, and then we tried to squeeze out as much time as possible with the four of them :)
There was the Denver Zoo, Swimming, lot's of time spend eating foods, playground adventures and of course a tour of the Ducky Store ;)
Ron missed out on most of this due to being on Reserve for a second month in a row. He is also battling a bad head cold which I think he caught from our dumplings.

It is of course always sad to see them leave again and the biggest heartbreak seems to be for the four boys. Truly we are lucky to have kept this close bond between all of us considering we have been living in separate States now for 5 years!

Today is Thanksgiving Day and as with all the Holidays, Ron is out flying and the boys and I are in tune of making up our strange and ever changing Holiday Traditions :) Today we all watched the Parade together and then we split up ... Alexander has been busy watching Football in the bedroom, Connor is watching Loony Tunes down stairs and I have been baking Christmas Cookies and Addressing Christmas Cards. Now I am considering taking them to a movie and having Dinner out.

To most of you this might now all sound like a lot of fun but it is to us. A day 'off' where we all can do the things we love is a treasure and we are grateful for the break :)

Wishing all of you a most wonderful Thanksgiving Break!

So much to be thankful for and it has been fun thinking of something we are each grateful for each day for the last 21 days.
I am always the most grateful for my Family, my Friends and the options we have by living in a country where everyone is free! To have access to the medical needs Connor has .... to have the convenience of the Technology that we are able to use each day. For me to be able to speak my mind and not get punished for it.
Those are all gifts that I should never take for granted!



Love to all of You,

R A C A

Tuesday, November 13, 2012

Home Sweet Home :)

What is the best thing to do after you get home from an 11 day vacation in Germany? You wait 4 days and then decide it is time to get on the road again and drive Ron's little Audi A3 from CO to TX....

Ron flew out the day before for a two day trip and the boys and I set out at 3:25 am on Sunday morning for a 12 hour drive to Texas.
We made it to the Red Robin Restaurant in Grapevine, TX, by 5 pm to meet the Tossell Family for dinner!
The best part about this adventure was the fact that the Audi supplied no DVD Players and since the boys had gotten into a bit of trouble for not behaving to well the day before there was also a no no for the use of any electronics like the beloved iPads.
So 12 hours of driving with just old fashioned books, paper and pencils. We did have the Satellite Radio so that was a treat and the one time the boys decided to take a nap was when Mommy decided it was time to listen to some news instead of music - haha
Gosh am I am mean Mommy or what? We;;, I have to say the drive went smoothly and the boys never complained once! Shocking to me! ;)

We had planned to fly back home the next afternoon but Ron talked us into staying one extra night so we were treated to a day 'off' as in going to the movies (Starfall - James Bond) and then Coffee and Cake at my beloved Le Madeline's. Oh how yummy that Sacher Torte was .....
Finish this with a scrumptious dinner at Aspen Creek and you know why I fell into bed with a Food Coma!

We are now home again and back into school mode. I am happy to say that both my dumplings did do school work while we were in Texas but now are catching up on the Videos tonight.

The rest of the week should go fairly normal and then we are looking forward to the home coming of Ron on Friday and the arrival to Colorado by the Tossell Family.

Ask me when I am planning to slow down? probably only when forced to as each time I am on the move I feel more energized. For now at last :)

Hugs,

R A C A

Saturday, November 10, 2012

Happiness comes in many ways and Forms :) Germany 2012

Hello my lovely Friends,

It has been a while since I posted and it is all due to me having to much fun and being way to busy while we were in Germany....

I can not tell you enough how much I was looking forward to our trip and the boys were 'almost' as thrilled and excited as I was :)
The four of us left on November 24 to arrive in Frankfurt on the 25th. We were picked up by my Brother In-Law and truly hit the pavement running from the very beginning. On the 26th we were lucky to celebrate my nephews 30th Birthday and on the 27th the whole Family (minus one Nephew and his wife who are in South Korea) met for Dinner :)
Mama (Oma) & Papa (Opa) - our Hosts :)
Carmen, Erwin, Melissa, Vural, Jamia, Kian & Nicole,
Elke, Klaus, Markus, Sebastian, Lukas & Sabine
Thomas, Klaudia, Katharina, Martin & Alexandra (Maurizio musste leider Arbeiten)
Beate & Rainer,
Anke (ME), Ron, Connor & Alexander :) 

Not to get us to relax to much, Ron and I were off bright and early the day after (28th) for our train trip to Munich. The boys got the chance to being spoiled some more my Oma, Opa and Elke at home....
In three days and two nights in Munich we packed in several trips to the Marien Platz, touring all the Churches and lighting a Candle in each one of them (I know, you are suppose to light them to honor the dead but I figured with all that is going on in my life I light one candle for every cause that was on my mind and let me tell you it got a lot brighter - haha ;)
We climbed the Tower of St. Peter (301 Steps), we ate lots of foods and drank Beer at the Hoffbrau Haus and other great Breweries around Downtown. We toured the Viktualien Market twice and walked all the way from the Isartor to the Marien Platz and back to our Hotel over the Isar several times. It is a good thing we walked for miles and miles on this trip as I was eating all my favorite foods, cakes and pastries and I needed some balance - haha.
We also went to tour Dachau and the Concentration Camp. This was one of Ron's wishes and as a German I wish everyone that comes to Germany makes this a part of it. So much to learn and the feeling you get by actually being there is not comparable to books at all.
We arrived at home in Weinheim again on Tuesday night the 30th, with a 25 minute delay from the German Train System ... shocking, right? Well, I was told that only the Swiss keep their trains on time at this point so there you know it - haha
On the 31st we got prepped for the boys (and mine) very first German Halloween Trick or Treating? Suesses oder Saures ;)
I dropped Ron of at my sisters and brother In-Laws Home and then took the boys in their Ninja gear to the Windeck Fortress. After this we met at my Nieces Home for all the kids to prepare to walk the neighborhoods. Well, lets just say I was not sure what to expect but it was a hoot ..... The kids were all super excited and those Germans took the Costume selection very serious as only scary Costumes where shown along with two very cute girls in Angel Costumes who told me in a very firm voice that they were not just Angels but Angels of Death.... No joking around here - haha
The best part however from the Adult perspective was the fact that the kids got German Chocolates and Treats and we grownups were served with Champagne and Schnaps. Trust me it was well appreciated walking through those cold cold streets ;)
We finished that day with a very yummy dinner at my Sister's House and thoroughly enjoyed the great conversation we so rely on when we are with them :)
My two dumplings ate as if they were starving and are still calling my sister Beate the best cook in the world. There was hardly as scrap of Salmon or Spinach left..... A hard act to follow - haha

The next day we laid low a bit as Ron was preparing to head home the following day. Oma, Opa, the boys and I met with my brother and sister In-Law for lunch and a tour at a Furniture Store that involved Face Paintings, Balloon Animals and a sampling on freshly prepared Chocolate Treats. I tell you we need some Furniture Stores here in the US like this one ;)
Back in Weinheim I took the boys to the Stadium to burn off some energy and it was great to see them run in the same Tracks that I had my Track and Field experiences when growing up. We ran several 100 m dashes and one 400 m dash. Super exhausting for us ;) So we had to rush home and have to Coffee and Cake to strengthen us ;)

Ron left on a very full flight and I headed back to take the boys into town for an exploring rip of the Wachenburg and a hike through town. We visited Carmen at work and brought her a little Bakery treat which resulted in the boys leaving the Bank with more Chocolates. I tell you you can hardly visit anyone without being showered with treats so no wonder we all ride bikes and walk all over the places.
The following Day I went shopping with my Mom, Sister and Nephew and then took the boys to see my Aunt and Cousin.
We finished that night with driving my parents to another Aunt and Uncles Diamond Wedding Anniversary and a Dinner for the boys and I at my oldest Sisters Home. Here the boys had more playtime with their little cousins and I enjoyed a wonderful dinner, conversations and laughter with my sister, her husband, my niece and her husband. 
The best part about this trip was all the laughter and relaxation that comes with being around family and friends we love so much.

Then came our last Day in Germany and here we always get spoiled by staying home and visiting with everyone that makes time to stop by to say goodbye. It makes for a full house at my Mom's but it is truly lovely. Between packing and some more laughter we were ready for an early night and then an early pickup by my brother who drove us to Frankfurt.
Lucky for us we made it in Business Class again even with a 2 1/2 hour delay. The flight was lovely as was the one coming over and the only hiccup was the Migraine that started in my head half way over the ocean. It got worse by the fact that we had less then 1 hour to make our connection home or face a 4 hour wait in Dallas. We ran through Passport Control, Customs and back through Security. We jumped on the Skylink and raced to the gate with honestly only 1 minute to spare. The door closed right after I stepped on the plane!
Now all this did not help my head at all and by then I thought it would split open.
Never less we made it home, caught a quick Dinner at Denny's were we witnessed a very somber gathering of the Republican Party who must have set up an event in the hopes to celebrate a win. 
I had not had time to follow the Election due to us traveling but knew then the possible outcome as the mood was not upbeat at all.

So with some Migraine Medication I fell into bed and woke up refreshed, happy and recharged....
that lasted until I faced all the work that had piled up while we were gone - JUST KIDDING!!!!!!

Happy to be home! and since it is November and everyone is posting about what they are Thankful for in life I am putting my Family at the top of the list.

To see how much love my boys has for them makes me realize even more how lucky I am. We might not be perfect but gosh how I wish everyone had a family like mine. We are funny (laughter is after all the best medicine ;), we are supportive and loving. We know how to debate and stick together. Oh and we all know how to enjoy great food and drinks ;)

There was a time I was worried if I could put into my boys the love I have for the people and the country I grew up in. I know now this worry was groundless as they tell me they would move to Germany in a heart beat and they are so happy when we are there. Granted, it is just a vacation ... no school and of course no Therapy or Hospital stays for Connor, but they do understand the core that made me who I am, shaped to the better and good by the people they call Family.

Hugs,

R A C A