Lab Results Up-Date ....

So I had a most positive email waiting for me this morning from our beloved Dr. Soep.
Connor's Blood Work is looking better each time and the numbers are coming down nicely.
The part that throws us now is wondering what is going on with Connor and his continue measure of pain he is displaying.

Our next step will be to look into a Pain Clinic to help Connor deal and manage his pain, but also look into therapy for him to see how much his fear of JM is impacting his movements as well. 
There has been a lot of fear in Connor about this flare. He is worried he will have to be hospitalized again, he is worried that he will have to have his Port put back in. He worries about missing out on school activities and Snow Boarding this Winter, etc etc
We all agree that his fears might be contributing to his confidence of moving.

Does this make sense to all of you?

It would be actually nice if this was the core of it all and not something new that is causing him all this pain. This morning he was hardly moving and when I told him we had to work on his school pages he just sat in his chair with tears running down his face.
It was so sad but I kept moving on and after about 20 minutes he turned his mood around and has been a trouper at school. 

I also left a message with the Surgeons Office to take care of the Port Issue and the poky thing that bothers Connor a lot. I hope we get a response soon on this as well :)

Alexander on the other hand is battling a cold right now with a very stuffy nose and an inability to sleep through the nights. The last three nights we woke up in the am and found him sleeping on the Sofa in the living room. So we are curious to see how good we are at keeping this cold contained to sweet Alexander!

On a different note we had a wildlife experience today when Apple and Tasha cornered an animal on a tree on our 'Mountain'.
I admit I was scared to see a Bear in the Tree only to discover there was Cat up in the tree.
We locked up the girls and went inside to give him or her some time to get down, sadly for us but happily for the Cat when we went back to check on him, or her, 30 min later there was no more sight of it.
We so hope it found it's way home! and I am hoping this was an accident and no one in their mind will let a Pet like a Cat run around the Forests here. This was 'just' our dogs cornering it but a big bird, Coyote, Fox, Bobcat or Mountain Lion would probably think he made a great snack.

Hugs,

R A C A

Infusion Day and Therapy

As you will see in the pictures below, today started out with us not having to use the Wheel Chair!

We had to get up early in order to have breakfast and then head out the door by 8:30 am. I know, I know ... for all your normal people that might still be considered late but for us spoiled Home Schoolers this is way to early - haha

We arrived at the Infusion Center a bit before 10 am and were happy to have some time to get some treats for the Staff at the Center for Cancer and Blood Disorders. Connor went and picked out some Red Roses and a box of Chocolates and I can tell you it was a huge hit. It was something so minor to do but so wonderful to show them all how happy we are to have them look after Connor.
Connor had five vials of blood taken and then was hooked up for the 1 hour Solumedrol Infusion. It all went smoothly and I was even able to have Connor complete five of his 11 pages of school today. They only huge complain for Connor was my already anticipated taste bud challenge for him. Whenever Connor gets Steroid Infusions he complains of having a metallic taste and no exception today. We tried crackers, juice, fruit gummies and a lollipop but no luck covering it up.
The new Infusion Center by Briargate Pkwy is by the way very impressive. It has all the conveniences that TCH offers with hardly any 'traffic' there. All the rooms are private and have Cable TV and Video Games. There was also the open area where you can socialize if you feel like it, plus a huge kitchen with all kind of goodies. 
Now while we were there, there were only about 5 other children there as well. Most kept to their rooms like we did but one teenage boy was sitting in the open area in a Recliner. I have to tell you it is always hard to see little kids being hooked up but I admit it really put an ache in my heart to see this 16 year old boy sitting there all by himself. I was wondering if he actually drove himself here and for how long or how many years has he had to deal with this?
Could this be Connor in 8 years? 
So much sadness comes with being in a place like this and so much of my gratitude goes towards the people working there. 
How many times am I going to be reminded of how little I once knew about places like these? 

After the Infusion was over we headed to Panera Bred for Connor's favorite lunch place. He ordered Macaroni and Cheese and his favorite Tomato Basil Soup. It was hard to see how excited he was about the food to then watching him hardly eat anything. His taste buds and tummy just were not up to it and I promised him we would be back when he is feeling better.
Then came the time to head to the Therapy Center on the other side of town for Connor's first Water Therapy. He had a lot of fun but was tired and exhausted, so his focus kept going away. Luckily he has a great Therapist who said to not worry and that hopefully next week we can get more work in. She was kind to tell me to write down how Connor was feeling for the next few days so she knows if she can push harder or if we need to back off some.

We finally arrived back at Home by 4 pm and I just wish I could have headed straight to bed. I hardly did anything physical but my mind was so tired ...
However, since we do not want to fall behind when it comes to school, Connor, Alexander and I trotted up the stairs, after our Coffee and Cake break, to put in one more hour of school. We finished about 8 pages out of the 11 so looks like tomorrow will be a looonnnng day in school.

Thanks for following along and wishing you all a good night :)

Hugs,

R A C A

Looking forward to Infusions and Therapy???

I am sad to say that the last two days were also very rough for Connor, so we are now looking back on four solid days of him not doing so well.

I said to my husband this morning that I am looking forward to the Infusion that Connor is scheduled for tomorrow. I felt bad for saying it but I am putting a lot of hope in it.
Interestingly Connor came to me today and said he can't wait for his Infusion and Therapy tomorrow either. So I know he is having a hard time as well with his inability to move and participate with others around him.

Yesterday I did not take the Wheel Chair to school but then regretted it as I had to carry Connor out to the car after school was over.
So today we started out in the Wheel Chair from the very beginning which was a good thing as Connor would hardly even walk once he woke up.
Sweet Alexander was the one helping him again get around this morning.

The cute part about todays school was Connor talking about JDM during Show and Tell, the crazy part about today was finding out tonight that my sweet youngest child decided to go pee behind a bush during recess! When I just asked him if he did he said 'YES' - well one point for honesty! When asked what he was thinking he said 'Well, no one saw me as I peed behind a bush and I had to go, plus I did not pull down my pants at all'. Well, to this I had to reply that of course someone saw him or I would not have been told about it and what exactly he does not understand about NEVER TO PEE IN PUBLIC??? yeichssssss.

Back to Connor, looking back, the Methrotrexate Shot from yesterday morning did not help as I had hoped so we looking forward to this next step.

I let you all know how tomorrow goes! Wish us luck that getting the Steroid Infusion will kick start him getting back on his 'feet' again!

Hugs,

R A C A

Rough couple of days ....

Connor had a very rough Sunday and is still feeling bad today.

Is biggest complaints are walking, pain in his lower back, issues with 

his eyes focusing and also the issue with his old port scar that has been bothering him.

It is a strange thing as we found last week that there is a needle head size poky thing under neath the inscision site. If you pull the skin tight you see a little silver black dot sticking out.

No clue what it is but the good news is that it is being addressed.

I had another e-mail from Dr. Soep and Connor will be scheduled for Thursday for his Solumedrol Infusion but I am told I can more it forward it we feel it necessary. I would like to but also want to see how Connor is holding up as he does not want to miss Cottage School again this week.

Dr. Soep also contacted the Surgeon to get his view on the poky issue and will get back with us.

So just hoping Connor stays steady or gets better in the next few days and not worse.

Wishing all of you a good week and I so enjoy seeing all the Back to School Picture postings from so many of you on FB. Our babies sure are growing up :)

Hugs,

R A C A

Our Journey thru JDM and Life!: JA Family Day in Denver

Our Journey thru JDM and Life!: JA Family Day in Denver: So a few weeks ago I signed up for our family to be part of the JA Family Day after we received a very lovely invitation in the mail. JA -...

JA Family Day in Denver

So a few weeks ago I signed up for our family to be part of the JA Family Day after we received a very lovely invitation in the mail.
JA - stands for Juvenile Arthritis.
Now I signed us up not being sure what we as Parents might get out of it but knowing the boys would love a fun day with JA children and their siblings.

I admit I went to bed last night feeling very exhausted from this past week and telling my husband that I might not be up to going in the am. The Family Day started at 10 am which would leave us with a departure of 8 am the latest. Ron already was not going as he had things to do at home and not feeling up health wise as well to heading to Denver.
The good news for me was the fact that I had NOT told the boys about this day at all so if I was not going there would be no disappointment about missing out.
The part you know about me by now already is that I am a spontaneous person and that when I woke up at 7:40 am I made up my mind to go ahead and go.
Now I had 20 min to get myself ready, tell my husband and tell the boys they had to be dressed in Swim Shorts with an extra set of clothing and be in the car asap.
The three of us pulled out at 7:58 am!
I had to add 6 minutes to our commute due to the boys wanting something to eat .... shocking! How could one need breakfast??? - haha. Sonics was it again this week, so we are on a record of fast food twice in one week :(

Traffic was happily our friend and we pulled into the parking lot of the National Jewish Health Hospital in Denver at 9:57 am!

I have to tell you this day turned out to be a huge success. I learned a lot in the break out sessions. The first one was broken up in Newly Diagnosed and Veterans, followed with a good 45 min of question and answers. I got a lot of new information but also was proud to find out that CureJM is very advanced in providing us JM Families with a lot of the answers that parents there were asking. 
While we Adults had this session, the kids got to go swimming in the Hospital Therapy Pool :)
Then we went for lunch which was Pizza, Salads, Chips and Cookies. The boys and I sat down on a table and started eating when a man walked up to us and asked to join us. I looked at his name tag and it had his name plus his disease. Turns out he works for the Arthritis Foundation, is 33 years old and was diagnosed with JDM at age 5!!! You should have seen Connor's face to be able to ask (almost 1000 questions) to this very patient man. He was also very nice to include Alexander in the conversation and the talk went from how he felt as a child with JDM, what kind of treatments they used back then and how he was coping having JDM and growing into an Adult. Of course Connor was shocked that back in his days there were no Computer Games to play when being Hospitalized :-O Alexander was fascinated to learn he used to live in Philadelphia and his favorite Football Team was the Eagles.
After lunch we separated again the Adults from the kids. We Adults went to the Auditorium for a lesson about how to advocate for your child (when I showed the program to my husband when we got home he read: How to avoid your child!) Funny as I told him I now knew what he was really thinking :)
This session was very fascinating as it touched School Issues and also how to communicate with multiple doctors. The second was a no brainer for me as we have no issues there at all but the first was very eye opening.
There also was a Clinical Pediatric Psychologist who was very interesting to listen to. The impact any disease can have on the mental state of a child can be huge and I know that both my dumplings have been battling the issues about death more then they should at their age. I had a lovely conversation with her and I think it is worth looking into.
While we Adults enjoyed the Conversations the kids had a huge blast building Soda Pop Rockets out doors. I can tell you my dumplings were soaked in Diet Coke when I picked them up. Good thing they had hoses to wash them off before I let them in my car :)

We arrived back at home at 4 pm and Connor took a nap in the car and is already asleep on our sofa now at 7:30 pm.

So Thank You JA Families for making us a part of this and how wonderful it was seeing our Dr. Soep in her element helping so many JA/JM kids now for 11 years here at TCH in Aurora!

Hugs,

R A C A

Another Doctor to add to our Dream Team?

Yesterday was a a painful morning with the boys and I having to get up at 6 am to make our Appointment with Dr. Maynard at Iron Horse Pediatrics at 8 am. Even thought Alexander and I have been getting up at 7 am for the last few days, anything before 7 is truly a huge challenge for us :)
The treat for the boys was a breakfast at Sonics and I got my treat at Starbucks which helped lift our spirits ;)

The Appointment itself went very well and and Dr. Maynard was so attentive and took lots of notes that the time flew and we only realized when leaving the Office that we had spend close to 1 1/2 hours in his office.
He had some recommendations for Alexander and told us he will be calling Dr. Soep to talk to her about Connor and also see if we can expand the blood work taken from Connor. He was interest in the Blood pallets for Connor and he also had signed the script for the Orthopedic Braces for Connor.

We left the Appointment feel good to have even more eyes looking into the cause of Connor's latest set backs. I am just having the feeling that JM is the core problem but maybe this virus that set off this flare is still causing more havoc then we like ....

Good news was we were back home by about 11 am and were able to still squeeze in school time and a NAP!!!!

Today is a very excited day for us as the USA Pro Challenge Bike Race is coming past our front door. This Stage goes from Breckenridge to CSprings along HWY 24 so we are having a front row seat :)

Oh, I forgot to mention in regards to Connor we were also inspired by the Miller Family to try out for him to use the Sauna to see if it would help relax his muscles and so far he was in it twice this week. He really likes it and so does Alexander who we hope it might help to relax him some :) 

Funny, how things always come full circle. I remember posting over two years ago that the more immobile Connor gets the more Alexander starts moving. 

Wishing you all a nice weekend!

Hugs,

R A C A

Therapy Evaluation

Trying to find our rhythm again after this long summer break is not always easy but we are trying :)

This morning Alexander and I went for a run again and then had about one hour left after breakfast to get some Lincoln Interactive School time in before we had to leave the house for Cottage School (Alexander) and Connor's PT Evaluation.

We arrived about 10 minutes early at school (no surprise for my friends who know we are always early :). I was lucky to be able to meet with the Nurse and Principal to hand in my Letter to the School in regards to Connor's newest health challenges.
It was good to hear that both supported a 504, however, since Connor is not a full time Student at Gateway and does not receive Grades for the extra classes he takes there as in Music, PE and Art, they were not sure how it could be implemented. Now I did tell them I was more worried about his attendance record then anything else as I am confident he will keep up academically. That's why we love Lincoln Interactive so much!
Today was a great example for this as the Therapy Center did not give me any leeway in regards to the Evaluation which they told me could only be done today at 1 pm. So sadly for Connor he ended up missing his second day back to school.
The Evaluation, however, went very well. It was of course very exhausting for Connor but it gave them there a very good picture of all the things that need to be addressed. Connor got a new script for Braces and to see an Orthopedic Doctor. Lucky for us we love the ones TCH has ;)
We also hit the jackpot when the Evaluation was done and I stared asking the Therapist about his thoughts of Water Therapy. He was very supportive of it and told us he would check the schedule.
This is when I got nervous again as I used to always get the early morning slots before. I did tell him I needed Tuesdays and Wednesdays off limits due to Cottage School and that I would highly prefer an afternoon appointment.
Well, he said he would be unavailable then as he is only available on Wednesdays BUT that he will check other schedules.
The great news is Connor got a slot for Thursdays at 1:45 pm!!!!! This is a huge win for us as I will be able to keep school at home on our normal schedule as well. Thank goodness for this gift!

Connor fell asleep as soon as we got in the car and his muscles have been hurting him since the Evaluation as he had to try and make many movements that have been hard on him. He was also sad to hear that in order for him to keep riding his bike he should go back on training wheels. This was probably a great sentence for Connor as he is a fighter and does NOT want training wheels ever again ... talk about a motivational kick to work hard in Connor's language- haha

We made it back to WP with 15 minutes to spear before Alexander was done with school. Perfect timing.

Thank You for the beautiful txt messages today from our beloved Jaja and Alia.

Hugs,

R A C A

A MUCH better Day :)

Today was such an improvement to yesterday and I feel bad for taking you all with us on this Roller Coaster ride! You must be getting annoyed at me for posting all these up and downs!

We started this morning with a wake up call at 7 am so Alexander and I could start our back to school and Fall tradition of going on a run. Now our run is just a 1 mile loop around 'our Mountain' but if you have been to our home you know there is not one flat surface to be found. So you either go down or up. A great workout in fresh Mountain Air. It does wonders to calm down our youngest for school and to get me energized for the day :) I do have to tell you however that it was a very crisp 46'F! yesterday we actually were in the 60's during the day and the tree's are changing colors so Fall is right around the corner here in the Rockies!

This am Connor got his Methrotrexate Show from me and it went very smoothly. We timed the Lidocane to 35 min and then he was watching the UTube Video of Nancy Sinatra 'These Boots are made for Walking' and he did not even realize when I poked him! Huge success :)

We finished some school at home and left the house by 10:30 am for Cottage School.
Everything at Cottage went smoothly and my dumplings showed such amazing behavior that I wanted to pinch myself. Polite, Quiet and very supportive and helpful to the new Kindergarten Kids addition to the Class Room. Gosh, we have so many new adorable 5 years old's it was pure fun.
There will be a couple who will keep this school year interesting BUT not in a bad way but in a pure funny, stay on our toes way :)
I had to hold back a laugh when Alexander finished his Sweden Country Report and was asking if anyone had any question. One child raised his hand and said he did not have a question but he knew that God died in Sweden. I think there was pure silence for about 3 seconds ..... CUTE!
There also is a new Music Teacher that my little ones LOVE. When i asked them what her name was they said she told them to call her Miss Music but that they don't think this is her real name - haha

I was lucky to have a short visit with Alia and even see Elizabeth. Her little sister is now in Cottage School and I tell you there is something about this family that you just want to hug them all the time!

We are home now and so far Connor is still doing well and we are now looking forward to the PT Evaluation tomorrow.

Hugs,

R A C A

Still on the Roller Coaster ....

I am sad to say that today was not a good day for Connor health wise ...

We started out well this morning but we knew something was brewing as it took him more effort to walk the stairs and his legs looked very stiff again.
First on the schedule was school and Connor was very focused and did a wonderful job at getting his assignments done, which was more of a challenge for our all over the place youngest ;)
After school and before lunch I told both they could go outside to play (they call it recess - and I call it a time to get the wiggles out of them), mostly for Alexanders benefit :)
Alexander did not wait and was outside, playing Volleyball on the Trampoline, within 10 seconds, which is a new sport he created and is very good at :) 
Connor surprised me in saying he was going to stay inside and help me. I always know he is feeling badly when he starts wanting to be clued to my side.
After about a half an hour he said he wanted to go outside and ride his bike. He got his helmet and went out but came in shortly after crying that he could not ride his bike due to his legs being in to much pain to pedal.
He had a good lunch (appetite is way up due to those lovely higher dose of Steroids ...), and he took it easy all afternoon until it was time for us to leave at 4 pm for the Open House at School.
We wanted to go to see some of our friends and also get all the school supplies into their shelves, but I now wish we had stayed home and just caught up with everyone tomorrow. We arrived at school and it was indeed lovely to see so many of our beloved faces but Connor went downhill fast. He played for a bit and then I suddenly found him in a corner with his head down and looking close to crying. I asked what was wrong and he said his muscles are hurting to much.
We left with me carrying him to the car. Tomorrow I will bring his wheel cahir to school just in case because carrying him is quiet a bit harder then when he was 5 years old and first got sick.
Right now he is laying on the sofa and his body is cramping up again :'( I gave him his Naproxen, 7.2 ml, two Tylenol and his Trazadone and I am hoping it will help to get him to sleep. He is watching a Documentary about China right now which keeps him distracted for now.
Tomorrow is his Methrotrexate Day and my hope is that by giving him his Shot in the am he will start feeling better throughout the day.
I did e-mail our Dream Team already but also made an appointment with the boys Pediatrician for Thursday morning at 8 am.
Connor will also have his PT evaluation done on Wednesday at 1 pm and it will be interesting what rating he gets.

Now there was a highlight today for Connor that got a huge smile out of him and that was a Card from his beloved Miss Nancy and Mr. Ed. Oh how our adopted Families know how to spoil our dumplings! THANK YOU Nancy and Ed because the timing today of that Card was perfection!!!

I am sure I am forgetting something but this was about the core of what happened today.

Thank You as always for checking in and as always I will keep the updates coming :)

Hugs,

R A C A

Saying Goodbyes .... ;'(

As many times in the past we had to prepare and enjoy our last week with 'Oma and Opa', this time was hard on our emotions as well.
We are such a selfish bunch but getting ready to send them back home to Germany is never any fun for us!

Yesterday was the day of doom when we first said our Goodbyes to the Miller Family who was heading back into the direction of their home State, followed by a few minutes later loading up the Sequoia with Suitcases, Connor, Alexander, Oma and Opa and I for our drive to Denver.
Now we did not head straight to DIA but had to stop at The Children's Hospital first for some more Labs to be taken from Connor.
This process when super fast and Connor was such a Champ as they do not use any Lidocane or Icy Spray there but go straight at it with that little needle. No worries however for my JM warrior who only had a few tears but was so composed!
After this we decided to give Oma the one treat we had not been able to uphold until then: Eat some Seafood! Now we are in Denver and far away from the Ocean but we knew we could count on some decent food and fun at Joe's Crab Shack. It was a lovely day so we got to sit outside and talk while the boys played in the Beach Playground attached to the Back Deck. It was a relaxing time and we had a hard time getting up to head to the Airport.
Well, I have to admit we actually ended up with more time at lunch as the departure time my Mom had first given me of 16:30 was wrong as we were looking at a 17:50 departure :)

When we were getting ready to leave I saw I had an e-mail from Dr. Soep and the great news is that while Connor's Labs are not normal yet they are indeed heading into the right direction!!! I have also had some great interaction this past week with both Dr. Soep and Dr. Curran, who both have been in touch about Connor. So if you ever hear me refer to 'The Dream Team' then envision them as this is what Connor and I think they are :)

At the Airport all went smoothly. Oma and Opa were checked in in no time and they were set up for Wheel Chair assistance. We had time for one more stop to sit and Drink some Soda's and People Watch ... oh how I love this activities. We had some very interesting characters to watch for and so time flew while we all took turns making up stories about fellow traveler ;)
Then the part we dread the most came. Hugging and saying Goodbye! Connor completely fell apart ... he cried and sobbed from the time of the last hug until we reached Castle Rock on our drive home ... so close to 45 minutes when you include time to get to the car and out of the Airport. Alexander's last parting words to Oma and Opa were to please not die while they are gone from us!
I of course always have a hard time to say Goodbye to the two people who mean the world to me. 20 years in this country and the biggest heartbreak for me is always seeing them leave for home. 

The good news is we talked to them this morning and they arrived save and sound back in Weinheim. They are having some hot temps there and I am guessing they will miss the cool Rocky Mountains soon enough once they go to bed :)

Now here are some adventures we had since my last post and before we had to split ways:
On Thursday was Kim's youngest son's Birthday so after some high emotions in the am we all headed to the Cave of the Winds for some fun adventures. The Birthday Party included the Cave Discovery Tour (which was fun again as the last time the boys and I went there was with Oma and Opa 5 years ago!), very educational and my heart goes out to all those poor white nosed Bat's in the East. While I am very sad for them I hope they keep it in the East and keep our Western Bats safe here!
We then rode on the Bat-Line, the Zip Line that was put in I believe this summer. Fun, Fun, Fun ... unlimited rides and while everyone went twice I got somehow lucky to go three times ;)
Then we went on the Wind Walker Challenge. Now that was quiet an experience as you are put into a harness and then walk tight robes up and above the Canyon. All here went well other then Alexander freezing at one point in the middle of the robe course. Good thing they had great Employees who knew how to make kids and adults relax and have fun. I think we will be going for the Season Pass on this one next year as it was a great exercise that focuses on balance and coordination :)
The kids also got to look for more Gem's and Fossils and over all it was a Birthday Party to remember.
We ended with a very tasty lunch at 'Hell's Kitchen' Pizza in Manitou Springs where we all had the 666 deal. One Slice, three knots and one drink ... YUMMY!
You would think with my hurt hand from the Devils Playground I would stay away from anything that has the word 'Hell' written in it BUT since the Gentleman, who's son we took down Pikes Peak from Altitude Sickness send me a beautiful e-mail to Thank me and calling me ... yup me!!!! a Saint! I figured I was save. And I was right as I did not get sick or develop food poisoning ;)

Kim and her boys then headed to a Rockies Game in Denver while the boys and I met up with Ron, Oma and Opa for a going away BBQ Dinner. Finally after 9 weeks here they got their wish of BBQ Baby Back Ribs. It was a nice and quiet dinner and the only thing that stays a concern is Ron's recovery. He was in a lot of pain and still is.

So off to a new Chapter in our life and the trying to get back into a routine and school schedule.
Today the boys did a wonderful job writing those long due Thank You Cards and also working on their last Book report for this summer ... part of their punishment from some of the behaviours they exhibited last week will make this report a 50 sentence long master piece. I would be lying if I told you they were thrilled about this but then neither was I about some of the lost manners and acting up behaviors they brought to the surface last week.

I baked a Cake today and are looking forward to a normal day to day schedule. 

This is a very long post but I don't want to end without saying 'Happy 60's Birthday Kathleen Burkhardt' You are such a inspiration and how I will always cherish the e-mails and support you have send me throughout our fights against JM. Not only is she smart as a whip but she has a huge heart and adopted the boys in her circle of Family. You already know that anyone who 'gets' my dumplings has my heart!

Also a HUGE Thank You for the Carpenter Family who send those gorgeous and already very much loved Quilts to the boys. The smile Alexander has when he realized he was also getting a gift was priceless. The letters to the boys from a fellow JM and Twin Family were so touching and the message was right to the point: JM KIDS ROCK!!!!

Hugs,

R A C A