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, April 27, 2012

Travel Awards

Today I am working a special Award the boys earned and I chose one that is close to my heart.
I always wanted to have children that share my love for travel and I am lucky to say this is what I have. Two Road Warriors that love traveling as much as their Mom :)

So I started counting and we came up with 19 States and three Countries:

Russia, Germany & France.

Alaska, Washington, Oregon, California, Nevada, Idaho, Montana, Wyoming, Utah, Colorado, New Mexico, Texas, Oklahoma, Kansas, Arkansas, Illinois, Wisconsin, Florida & Washington D.C.

Looking forward to new adventures in the next few years and may we never loose our love to see and learn more :)




Hugs,

R A C A



Thursday, April 26, 2012

Alexander and Tim Tebow :)

A few weeks ago Alexander asked me if the could send a letter to Tim Tebow,
telling him that he thought he was a great player even if they lost the game in the play offs.

Yesterday Alexander got a Autographed Card in the Mail from Tim Tebow with the following words on the back:

"Thank You so much for taking the time to write to me. I know there are a lot of football players you could cheer for, so I'm honored to have you as a fan.
Always remember, "Hard work beats talent when talent doesn't work hard.
God Bless, 'his Signature' "

Now this brought true joy to my heart as it made Alexander so happy to receive this card.

Thank you Tim Tebow to show so much class and style to respond to the mail you receive. I am sure it is plenty and we did not expect a responds but are thrilled he got one!



Hugs,

R A C A

Wednesday, April 25, 2012

Normalcy

:) Oh how I adore and love 'normal days' or a 'normal week'. I admit I love it as much as I like being on the go, traveling and being surrounded by family and friends that are visiting.
I find the beauty is all in the balance :)

This week and next are suppose to play out as normal as our life can be. School for five to six days a week, no plans and just being home and working around the house.
All is going by plan with just a tint hiccup of Alexander staying home from school today due to a sore throat and feeling yucky. No fever but he did ask to stay home and since he never asks this we new he needed to lay low.

Ron took Connor to school and he was still excited to go even without his brother. Connor has been doing amazing on his taper and removal of the Cyclosporin! No signs at all that this would be a fall back at all. Today is his Methrotrexate day and we will keep this for quiet a while but as mentioned in the last blog we are hoping of more tapering on the Prednisone :)

Ron and I celebrated our 13th Wedding Anniversary yesterday as well and what a journey this has been :)

So wishing you all a good week and if you do not hear from me it just might be due to nothing new to report :)






Hugs,

R A C A

Saturday, April 21, 2012

TCH and times with Friends!

Oh how much can happen all in one day!

Two days ago Kim and Grant arrived at our home and yesterday we all headed to TCH for Connor and Grants appointment with our precious Dr. Soep.
Connor got nothing but great news when we were told that we could stop the Cyclosporin (4 less pills to take each day!!!) and that Dr. Soep will talk to the Surgery Department and schedule Connor for his Port removal that might happen in two to three weeks!!!!!!!!!!!!!
This is thrilling news as we were also told that if his blood levels are looking good and steady in two to three weeks then we will also continue tapering the Prednisone :) Truly all of this made me so happy insight as I feel we are looking at our biggest break through yet. Connor will externally look like every other child  and the only thing that will stay around are his Methrotrexate Pills (Chemo) once a week and of course the supplements to counteract some Chemo side effects as in Folic Acid, Ergocalciferol, Tums and Multi Vitamin :)
We happily take all that!

Now no visit to any place goes without some excitement of course, and this time was no exception. We had just passed Castle Rock on our way to TCH when Connor squealed he had a spider or bug on his belly. Kim took a look and there was no spider or bug exactly but a yucky Tick. So figuring we were on our way to a hospital we kept going and told him to ignore it. Well if you know Connor that is easier said then done and we had to take the rest of the drive to try and calm down his nerves.
We arrived and the big surprise was that Ticks are not that common a occurrence at the Infusion/Oncology Floor - haha :) It took quiet a bit of work and time to work on a Tick that did not want to let go. So the nurses soaked her in Alcohol, when this did not work they slathered her in Vaseline, still no letting go of Connor's belly. Kim told them to try and use a silver nitrate stick that is used to cauterize and touch the back of the tick with it. Well in the end it was Kim's initiative and taking over the stick and the tweezers that got out this wicked Tick. So you can guess who was Connor's ultimate Hero yesterday!

After our excitement we all went to have some well deserved Gelato followed by meeting Friends of Kim and Grant for dinner at the Yard House who had moved from Chicago to Golden two years ago.
The night ended with some fun play time and even an exercise trip to the Amphibian Theater at the Red Rocks in Golden. What a beautiful place and Conor ran up and down the steps twice! Kim, Alexander and I went once and I am counting this as an exercises as my lungs and heart were given a huge workout :)













Hugs,
R A C A

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

Tuesday, April 10, 2012

Celebrating and a sigh of relieve!

I admit I should not take Politics at heart as much as I do but today's news about Rick Santorum leaving the race was truly a huge relief for me and my family.

I was running errands when I received a txt message from my friend Kim and I felt happy since then.

I do not really have to explain why since I layer it all out in the blog when we had our Santorum encounter but I wish you all could have seen Connor's face when I told him.

Now I admit I was reading some news reports since I came home about why he pulled out. It will seem cold to you that I do not buy into the part that he is pulling out due to his daughter being sick. She has been sick since birth and has been in and out of the hospital during his campaign before. So I am celebrating that his real reason for pulling out must be the facts that he realized he truly has no shot, could a possible loose in his home State be the reason? would be pretty embarrassing.

On a lighter note, I guess that means I won't get to see President Obama face off against this hypocrite of a person and I can put my move to Germany on the back burner for now ;)



Hugs,

R A C A


Saturday, April 7, 2012

Happy 8th Birthday and our Texas adventures :)

I admit I should have been writing sooner and there sure has been a lot happening in our life but for some wicked reason I did not get the energy together to post any sooner ;) maybe it is my new happy pills that keep me to content to write - haha

First of all my babies have turned 8 years old this week! Eight!!! so hard to wrap my mind around!
Yes I get nostalgic at times about how I miss them being babies and toddlers but then I feel so much pride looking at the amazing, handsome and smart boys they have become. So many times each and every day I realize how already they have all these little streaks of independence. As I said in my FB post the day of their Birthday, I believe in all my heart that this world is lucky to have them in it!

Now I am going to back track on our Texas trip. Ron was scheduled for training at the Academy for a week and since it coincided with the boys Spring Break we decided to come along. We opted to take Ron's car on a road trip so we would have transportation and only battle Airplane waiting lists on one end of this trip. The plan was to all drive to Texas together in a two day trip, leaving on Monday. Then the boys and I would fly home on Sunday morning to be ready for the start of school again Monday.
So off we took and the drive to Texas went very well with a stop for the night in Amarillo. I got spoiled that night with a dinner at the Cracker Barrel and from then on it was a crazy week of eating for me :)
Once we got to DFW we stayed at the Park Inn in Irving and the activities started. On Tuesday afternoon after arriving we all unloaded and got back in the car to see some of our old playgrounds as in our old Neighborhood and Neighbors and then off to Southlake Townsquare for some Dinner at the Rockfish and Ice Cream at Picodellos :)
The following day Ron started his classes in the afternoon so right after breakfast the boys and I spend some time in the Hotel Pool. Later we headed out for some exploring and found an ALDI store and I was in shopping heaven :) We had lunch at Central Market with some play time for the boys, we walked around the Grapevine Mills Mall and finished up with a trip to In N Out Burger in Irving.
On Thursday the boys and I headed back to ALDI to put together a care bag for the Tossell Family who we sadly did not get to see that week due to all four first being sick with Strep and then the Flue! Scary and I can't imagine having all of four of us this sick at once! Afterwards we went to Founders Plaza to sit and watch the Planes land and take off. What a fun place! I found it through 'yelp' and you can't get more entertainment for free as far as I know :) We went back to the Hotel and played some more at the pool :)
That was also the day I started to not feel well. My body felt completely out of sinc and all I could figure was the abuse I was causing my tummy with all the different food intakes and also not getting the air quality I am so used to. We literally went from cold air-conditioning out into warm weather constantly. I call it breathing in canned air and I know my lungs and body missed our clear cool air in Colorado.
So this all translated in the boys and I taking the day off on Friday. We spend time by the pool and for lunch we picked something up and drove back to Founders Plaza were we sat at the Park benches watching Planes again. Then we headed to the C.R. Smith Museum at the Academy while waiting for Ron to finish school. Once Ron got out we all drove to the Henderson Families Home and had a fun relaxing Coffee and Cake break here. It was amazing to see how much Andrew has grown but so wonderful to also still see the little boy in him who ended up playing to so well with Connor and Alexander. Of course it would have been funny to see my face when it was time to go and we found all three boys playing the xbox game 'Call of Duty'. Of course I should have known my boys would love it ....
Oh and I do have to mention even with my feeling out of sorts physical wise I still could not resist eating 1 1/2 Krispy Creme warm Donuts.
So with Friday behind us we hit the road running on what we thought was our last day in Texas. We met Kathleen, Charlie, Jessica, precious Baby Hadley and Holly and her girls for Breakfast at Central Market. Pure heaven spending time with people we love and adore! and of course getting some cuddle time with beautiful Hadley. Connor and Alexander were mesmerized by her and of course this date also involved lots of yummy foods ;-O
From there we went across the street to Southlake Townsquare to meet my long lost sister Pam, her daughter Kimmy, who is beautiful pregnant, and her husband Andy. This was another visit that brought back so many memories and the pure joy to reconnect. It was also heartbreaking to have some time to catch up on Pam's battles with Parkinson's. One more cause that I will do my best to educate myself about so I can be of help in the future. So here this beautiful get together included food as well and we ended up at the Rockfish and finished with Ice Cream and Picodellos again. By now I was on day two of feeling completely out of sorts and while I would at home have just curled in a ball and rest I was glad to have all this distraction by seeing 'family'. I truly do look on everyone we saw on this trip as Family and not just friends. They have all been with us for so long and so many years and through all our ups and downs. So while I do not miss Texas to much (other then eating myself crazy and going into a shopping nirvana ;) what I miss more then anything are the people. All of you bring so much happiness to us so THANK YOU for planning all the get together's and taking the time for us. Some like Andy and Kimmy even took on quiet a drive to see us.

Then came Sunday morning and our journey home. Ron drove the three of us to the airport and 'yes' all our Airline Buddies already know what it means trying to fly on Spring Break. Oversold, overbooked flights and us hoping for a miracle. Well, we like being at airports and that is a good thing! We tried our best, had lunch, watched TV and napped at the Non Rev Lounge and people watched. Our spirits were great but no matter what we did we did not get on a plane. Ron finally talked me into coming back to the Hotel so up we went and thanks to Ron got a ride back to the Hotel. This all payed off well as the boys ended up in the pool again and I got to talk Pam into coming over to visit more and then join us for Dinner :)
After this experienced we decided to not fly at all but join Ron again on the drive home. I was worried at missing two days of school but caught a break when Colorado got a bit of snow and the schools closed and called for a Snow Day :)

If you watched the news about the storms and Tornadoes in TX you also know we just made it out in the nick of time. We actually saw the storms build up on our drive north and I said it looks like Tornadoes were building as the sky was all yellow. We ended up spending the night in Childress and then ended up driving through snow once we reached New Mexico. We also found out we drove for 80 miles on a closed road due to the storm but did not realize it since we were following a Semi Truck that was ahead of us and going around the blockage.

So we got home late Tuesday night and then celebrated the boys Birthday on Wednesday. They were not happy to learn that before we could party they had school that included the BEAR Testing, but hey, that's life and normal people have to work on their birthdays, too :)

Hope you all had a great week and I am glad the Tossell Family is feeling better! It was strange to be just a few miles from them all week and not being able to see them!

Hugs,














R A C A