Missing Betty Mak....

Thanks to my friend Heidi, who I often refer to as my little sister, I was adopted into a most wonderful family.

First, thanks to FB, I met her beautiful Mom Nancy, and then was introduced to Heidi's Aunt and Nancy's sister Betty.

So many times I felt as if Nancy, Betty and I were the three Musketeers when it came to political issues and matters of humanity and human rights. Betty was also a voice for CureJM and had so much wisdom for me in regards to questions on how to deal with a rare Autoimmune Disease.

Her insight came from living with an Autoimmune disease for years and using many of the same medications Connor is and had been on....

We talked and messaged about the fear and frustrations that the side effects of some medications have. How they are needed to fight the disease but are also a thread to other areas in our body.

Getting to today's date, July 30, 2013, was not an easy journey for her. She had been in pain for weeks fighting Leukemia that with pretty good likelihood was caused from years and years of medications to control the Autoimmune Disease. More added pain came when it was detected that she also had Bone Cancer. Morphine was not a match for her pain and once again we learn how devastating Cancer is...

She passed away today and died way to young. My heart hurts for my friend Heidi and her Mom, Nancy. Betty's husband and her daughter and family..... 

Goodby Betty 💔 and may we meet again so we can talk some more about all the injustice going on in this world!

You are loved and adored by so many... And I will miss you so much on FB.

Ron, Anke, Connor & Alexander 

CureJM Conference and the Social Aspect....

There were many factors as to why we wanted to go to the Conference so much this year! For one missing it now for the last two years in a row after attempting to be there had been frustrating but also it brought us back to Chicago, the one place that brought us HOPE when Connor got sick...

I pointed out the medical news and seeing our beloved Doctors in another post and it really was a most wonderful part of this conference. Then of course there was the race part which was so much fun and really brought home how far Connor has come since December 2009!

However the one part that really was the heart and core of it all at the Conference was the social aspect... To finally hug and talk face to face with friends I had through CureJM and Facebook was absolutely a huge highlight for me and the boys. I wish I could list names but there are so many and I feel horrid to forget one or two. If you talked to me while we were in Chicago then know I mean you! You made me laugh, think and cry this weekend and I left more motivated thanks to you all.

I so wish everyone could experience this at least once but I know we will try to make the next Conference as well. As it looks it might be, but is NOT confirmed, in San Jose, CA in October next year :)

Hugs,

R A C A

Rock n Roll Race pictures....

When a Parent dies...

No I am not in a slump today but I have been reading a very fascinating book/magazine that revolves all around death. The stories and reports are mesmerizing and one of them pulled me in as to why the passing and death of a parent or parents is so hard.

We are looking at mile stones in regards to growing up and becoming 'Adults', but it is not the coming of age, moving into our first home or buying a house. It is not the part of starting our own Families and having kids of our own... No, through all this we are still children in our own eyes and to those of our parents.

When your parents pass you finally are hit with the fact that you are now not a child anymore as the one you looked up to is now gone. So to many of us the feeling of being truly pushed into Adulthood comes when your parents are dead and you can not switch into the role of a child and go to them for advice, rely on them to have the answers, and rely on them for that unconditional love.

So while I lost the unconditional love and support of my Dad, I am so grateful to still have my Mom as I am NOT ready to loose my Childhood yet. I still want to be someone's child!

Hugs,

A

Dr. Pachman, Connor and the Twin Research Study with Alexander

I am going to write about the past weekend events in section as to put all into one post would make for a lot of writing and information.

On Saturday, June 20, at the CureJM Conference were break out sessions in the morning and then sessions with Dr. Rider and Dr. Pachman in the afternoon.

Dr. Rider talked about Muscle Involvement and Physical Therapy which was very interesting and which brought me face to face with a Doctor again who we admire tremendously! We met Dr. Rider almost three years ago in Washington D.C. for the JDM Twin Research Study. She asked me how Connor was doing and when I told her about Connor's still stand in his tightness in his legs she right away told me we should come back to D.C. and see her as she thinks more can be done...

I was so grateful for her warm and friendly embrace and we had a few laughs as well 💙

The new Research on her end is focused as in part hw exercise can benefit but also which exercise needs to be avoided. Benefitting are Swimming, Yoga and any low impact sports.... The important part is to use the muscles but to not stress them. The ones to avoid are high impact Sports as in Karate, Football, Skiing and for example Jumping Robe on a Cement Floor. Another huge no no is Roller Coasters...

Then came the session with Dr. Pachman. She talked about the progress made in Research and also how the money raised from CureJM (this is were your donations went and are going :) are being used.

They found out the four trigger points for JDM/JM as in:

Trigger points are Stress, Antibiotics, Sun and Vaccinations

Ron and I knew pretty much what has been Connors trigger points. The first obvious one was the Vaccination as in the H1N1 Flu Shot Connor received in November 2009, and then we are guessing the second trigger was Stress when Connor had the Meltdown at the JA Camp last year in Estes Park. He had a Flare right after and since we don't think te sun and antibiotics where involved during this time we are sticking with Stress.

It felt good to see those points out in the open as I know many find the vaccination issue very controversial. 

Also with the money a Nutritionist was hired for the program and I love the fact that the impact of food is also now being considered. Many of us know there are foods that are antiinflamatory so why not utilize this or our children.

More good news came in regards to two new Research Programs being opened by Dr. P. She is now as well doing a Twin Study as well is looking for patients with JDM/JM that are now between 40 and 50 years old.

Now when I first entered the session I had Connor with me who had left the playroom to see Dr. Pachman. We had just gotten thru the door wen we saw her sitting all across the room in front of the stage. Connor took of running as fast as he could and yelled 'Dr. Pachman....Dr. Pachman!!!!' He have her a huge hug and it was such a joy to see Connor next to our Hero! 

She said she had no idea we would be here and was right away asking me if we would please enter her Twin Research Program. I asked her when and she asked if we could come in Monday morning. So after texting Ron and talking to him I made plans to spend an extra day in Chicago with the boys.

On Monday we arrived nice and early at 8:45 am and were promptly called in for the nail fold picture taking for both our dumplings. After this Connor was weight and measured and we were brought to a room for Connors PT assessment. Here Connor showed he improved by 1 point on the CMAS Score, up to 49!

Then came Dr. Pachman's assessment and while I thought she be happy at the improvements Connor had made she instead pointed out several things that needed to be addressed. First she said he needs to be back in Physical Therapy as the tightness in his legs should not be satisfactory for us. Then she said he needed his Thyroids checked and needs to have an eye exam every 6 months.

At the end she told me she wants to see Connor back in Chicago at least once a year but preferable every six months again.

We then had to go to the Lab to have both boys blood drawn. Lets just say Alexander had a very hard time with that one so a Child Life Specialist came in to help the boys through it. I truly or got what a huge heart and kindness everyone in Chicago had! They truly know how to get kids over their fears!

So and today on my way home from Texas I received a phone call from Dr. Pachman's Office to have me schedule an appointment for Connor for November. So I guess we will be back in ChiTown around November the 11th.....

More to come about this past weekends events but this was my view from the medical end.

Hugs,

R A C A

Santas Visit to our CureJM Kids in Chicago!

So Santa made an apereance this weeken to visit with all the kids at the CureJM Conference. He wrote an email about his experience to our Ninja Nana and here is what he said:



Was thinking about Santa's visit to the Cure JM conference Saturday. One request the children had was to sing a Christmas carol. I suggested Silent Night but was outvoted easily so we sang Rudolph the Red-nosed Reindeer.
Previously I listened to a wonderful Advent sermon series based around Rudolph. This morning my idle mind was in receive mode and I was hit with this:

Rudolph is so special now and arguably the most popular reindeer, but it wasn't always that way was it? Rudolph was different, visibly different, and that made him an easy target for the other reindeer.
They were mean, banned him from playing with them. It wasn't 'til Santa noticed the one special thing about Rudolph - his shiny red nose that others made fun of. Rudolph wasn't the strongest, not the most handsome reindeer, but he put to use his one special quality and did something that none of the others could.
The JM kids know they are different; we need to help them discover what is unique to everyone of them. They need to feel (you've heard this before somewhere) Wanted, Welcome, Useful and like Rudolph, Needed.
Santa

Now I like to add that I was told from our beloved Ninja Nana who knows Santa, that each story given by the kids put tears in Santas eyes....

She said he could not recall if it was Connor or Alexander but one of them sat on his lab and asked for Opa to come back from Heaven!

Hugs,

R A C A

Chicago Rock n Roll Marathon

So I am taking the easy route right now and will add my beloved friend Monica's Blog in here about some of the events from her perspective by running the Mini Marathon with Alexander....

http://thechubbygirl8partmarathon.blogspot.com/2013/07/inspired-and-excited.html?spref=fb


I ran it with Connor who completely amazed me as well. He said he wanted to try and run the race and his competitive being pulled through on each step he took. First his motivator was the fact he wanted this CureJM race to be his race and get through the finish line before his brother. The second push came by our fellow CureJM runners because each time Connor saw a bright yellow shirt he picked up his pace again as be wanted to pass as many as possible. It made me laugh how he would speed up to pass and then once he got passed them start walking for a while only to have to pass them again ;) the last 100 meters he took of as a sprinter that even I could not keep up with and he pulled off this race with a 13 min mile average!!! Take that JDM!

To read about Alexander's accomplishments which were just as amazing and inspiring you need to read Monica's blog. If you are inspired to start running or walking then please keep reading her blog as she truly is a motivator all around!

Pictures will follow once we get back home!

Hugs,

RACA 

http://thechubbygirl8partmarathon.blogspot.com/2013/07/inspired-and-excited.html?spref=fb

The CureJM Team!

Me and my hero Alex running!

Me, Alex, Connor and Anne!  This is the first picture in a LONG time I like how I look!  Loving watching the transformation in over the last 3 months since I started this journey!

I may be in that sea of people......  Likely the clump of VERY bright shirts at the start line on the far left side of the picture....

Me and Anke at breakfast.  I am always so impressed by how well she manages everything and has raised two of the politest and kindest young men!  Their compassion is amazing especially considering the medical issues and all.