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
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
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