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

Thursday, April 19, 2012

Travel Adventures to Oklahoma and beyond ;)

We are home again from our latest adventures and I am truly convinced adventures has never fit my description better then our recent trip to Oklahoma :)

This past Friday morning at 3:15 am the boys and I left our home heading towards OK. It was actually very exciting as we were looking at an 11 hour drive all the way thru with a lot of coaching from Miss Kim who is the queen of road travels and the confidence and support of my husband who let the three of us head out on such a long road trip.

So off we went and after about four hours we stopped for our Breakfast break and then we went on again only to stop at about every Rest stop that came our way. Small bladders for the boys and I, what else can I say :) I might also add that it took Coca Cola and Coffee to keep me alert so if that explains it :)

We did a fun excursion on the way to stop at the Cathedral of the Plains in Victoria, Kansas, and this Church was truly magnificent. We met a very nice older lady there who took a picture of us and told us more about the Cathedral.
Then we went on again until Wichita were we stopped for lunch and Milk Shakes at Braum's :) From there it was our sprint into Stillwater, Oklahoma, all the while being told that storms are in the forecast and Sonya telling me we were making good time and beating the rain.
We arrived in Stillwater by about 3:30 pm and headed straight to the Elementary school were Addie and Ren were finishing there day as well as Sonya finishing her work day at the Middle School next door.
How wonderful it was to see their three smiling faces!

We then all headed to their home and luckily the weather was still holding so all the kids plus several neighborhood kids got to play out doors on scooters and Bikes. You could tell by that time that a storm was moving in as the cloud display was very impressive. Also after a little while lightning started to appear so off we went indoors for some dinner and movie time.
Amazingly the three of us were still alert and loved to visit and talk that we stayed up until about 9 pm that first night. I can also tell you that within 5 minutes of our heads touching the pillows we were asleep.
This all would have been a great and uneventful night would I have not woken up at 2:30 am to some strange sound that kept getting louder and louder. Now I thought at first it sounded like a whistle or possibly high pitched train. So it took my mind about 3 minutes to be in a foggy thought that this might mean a tornado was about to hit us. Just then the wailing sound stopped and a voice came on saying 'This is a Tornado warning. Please take Shelter ....pause .... NOW'. Lets just say by this point I jumped out of bed and looked out our bedroom door to see the whole Herndon Family sitting on the sofa watching the news. Now if you do not know Sonya and Aaron then let me tell you you most likely have never met more composed a calm people then them. I asked them what we should do and Sonya said it looks like the Tornado warning is giving us about 15 to 20 minutes so we should get all the kids set up in the closet. I turned to wake up my two comatose boys and no matter what I said or how much I shook them they would not open their eyes. So finally I leaned over then and said 'A Tornado is coming our way, wake up!' and vola! my two dumplings jumped straight out of bed.
Now while we Adults seemed very calm our four kids were a different story. They were afraid and quiet nervous so we bundled them all in the closet and I handed then each an iPad to share. Within seconds there was no more sound coming from them other then the sound from Netflix playing movies. Oh the beauty of technology!
Now I can explain the reason why I was not very anxious at all after the initial shock even thought those sirens really got to you. I was watching all four beautiful cats which are part of the Family and they were sleeping or looking bored. I figure if anything was up they would sense it and run, so I kept an eye on sweet Willie and if he would have jumped and ran I would have jumped and ran for the closet - haha
All went very well after that and no Tornado hit us. Unfortunately it hit another town and they received quiet a bit of damage. We all then had the challenge to get four very alert kids back to bed and ready for a full day of excitements came morning.
Morning came way to early but with a fun outing for all the kids to go Rock climbing. Now Addie and Ren have been doing this for a while and the place they go to allows them to each bring a friend along. Connor and Alexander were over the moon and loved it.
We followed this with a yummy lunch of Pizza and a very yummy treat at the Orange Leaf Frozen Yogurt place. This was super delicious and we were all going back home stuffed.
Back home it was fascinating for me to see and watch all the interactions between the neighbors and the talks about Tornadoes and Storm Shelters. I tell you listening to locals made me feel like a foreigner because even thought I lived in Texas for 10 years it was eye opening how educated they all are and how serious they take it. The neighborhood Alarm system was truly on top of it the night before and my hat is of to Oklahoma and their advances in making life saver in Tornado Alley.
The not so happy news was that an even bigger storm was forecasted so plans were made on how to proceed that night should we get another warning. The kids all played happily outdoors again while all the Adults decided the best solution would be for everyone to head to the closes Basement Shelter which was about 2 minutes away by a Church. Sonya went a prepared a Backpack with Water, Flashlights and snacks, we lined up all the shoes and clothing in a row before heading to bed so we could all be out of the house within a minute. Sonya and I would take one car with the boys and Aaron was going to take the girls in another car along with sweet Kate, their dog. The cats would have to fend for themselves but we all know cats do better at times without human intervention and trying to catch them when they don't want to can be quiet time intensive.
As it goes when one prepares really well, we all went to bed and woke up around 8 am the next morning. No sirens and no voices telling us to take Shelter ... NOW.
So off we went to head to Pops on Route 66 to meet up with the Tossell Family and to complete our twin reunion :) Before we got to Pops however we got to witness Mr. Aaron rescue an Three Toed Turtle from the street which then got the pleasure to travel with us and was promptly named 'Shelton'.
Pops was a fun fun place with a Diner that served over 500 flavors of Sodas and for the first time of our friendships history we ordered a kids table and an adult table. It was a crazy feeling to have all us Adults on one table and all six kids on the next. I wish I could express how much happiness and joy it brought me to see all six kids back together and still being so in sinc with each other. No fighting or arguing all day between the kids!
After Pops we headed to the Oklahoma City Zoo and other then my youngest not wanting to walk as he said he was to tired (weren't we all? - haha). After halfway through the Zoo we rented a Wagon and the kids kept turns pulling each other, however Alexander got by far the most time in the wagon. We got to have some Birthday Cake at the Zoo for Malee the Elephant baby that had turned one that day and was very precious to watch :)
That evening the kids played outside again for a bit and then it was time to pack up the car again and get ready for another 3 am wake up call.
We left the house at 3:15 am and headed back home towards Colorado. Now on the way home we did not make as many stops but did have Breakfast at a Crackers Barrel and lunch at IHOP. I was going to stop to visit the biggest Prairie Dog Farm but unfortunately it was closest. So when we arrived at 2:30 pm in Colorado Springs the three of us decided we deserved a break from all this driving and we headed to the movie Theater to watch the Titanic movie in 3D. Great move and the boys loved it but I admit I had forgotten that it was 3 1/2 hours long! So we got home rather late around 8 pm, only to pull into our garage and realize I had no house key on my key chain. Not sure why not but here we sat in the garage with a garage door that had triggered the Alarm and no way to get into the house to turn off the Alarm. So luckily I got a hold of our beautiful Miss Lee who watches over our house, dogs and cat when we are gone. She was a trooper and was on her way to come and open up the door for us. So here we sat tired and getting a bit crummy with a wailing Alarm System and a cat inside who was complaint about what was going on.

I do want to mention that while the boys and I were on our road trip adventure my husband got a trip to Frankfurt, Germany, and he had a wonderful time with our family in Weinheim. I am so glad he got to spend time with them and we felt a bit sad to miss out on this but we know we will get another chance to go as well as hoping for another trip to OK!

So here we are four days later and we are as good as settled back into our daily life only to get ready for our out of town visitors from Chicago which will arrive tonight :)
We love having a exciting life!!!



















Hugs,
R A C A

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