The date is set for March 24, the same day Oma will arrive from Germany. We will have to be there at the Hospital at 5:30 am and the first surgery, which will be Alexander, will start at 7:30. Connor will get his turn at 8:45 am.
Oma will arrive in Denver arround 3:35 pm.
So I am estimating that on March 25 we will have a very quiet day at home and will all recover from either surgeries, international travels and from just being parents of a medically busy household....
Since the boys put on a brave face about the surgeries but are indeed pretty worried about it I figured we deserved some distraction. So today we went and finally watched the LEGO movie. Scary how I have to admit I am the most crazy LEGO person in our family - lol. We loved the movie and are now ready to be back in a creative mode and ready to throw out all those instructions ;)
Hugs,
R A C A
Hi! My name is Julia and I just stumbled across your blog while I was trying to explain to my friends what JDM was. I am 22 years old and had JDM when I was 6 years old. I have an identical twin who never had it, which sounds so similar to your story about your boys! I went into remission after about a year and a half of having it, so I was lucky. I took heavy doses of prednisone and looked unrecognizeable compared to my sister. I was short and chubby and she was slim and growing! After going off the prednisone I caught up to her and we ended up being the same height and weight. I also had a muscle biopsy because i remember it took the doctors so long to figure out what I had since it is such a rare disease. My twin has a slight case of scoliosis, so I find it so odd how one twin can have something while the other doesn't. I know that your son can get through this and will be healthy soon! I have been competitively synchronized swimming with my sister for 16 years and it all started from JDM when they told my family that swimming would be good for my muscles! I wish the best for you and your boys! Thanks for sharing your stories <3
ReplyDeleteJulia, you are such a treasure and THANK YOU for sharing your story! My boys will were thrilled when I just read your post to them and while they are just 9 years old they do have so many question as in why Connor has this and why Alexander does not. You are an inspiration and it takes role models like you to give hope to our kids and us as parents. Many hugs and wishing you all the best. Feel free to stay in touch raca040404@mac.com :)
ReplyDeleteAww this made my sister and I so happy to read! I will try and find a picture to email you of us together when we were kids and then how we look the same now! I'm glad that I could give your family hope because I remember how worried my mom was but she never seemed to show it with me. I was almost too young to really understand it but I remember similar details like walking on my tip toes and having to be carried up stairs and into bed because the pain was like getting hit by a train. My sister was so confused but my parents would tell her that she was lucky to be healthy! Since this was 16 years ago I bet that treatment is better now because we were living in Alberta, Canada at the time and there was only like 1 or 2 other people in Canada with the disease!
ReplyDeleteThanks to CureJM.org we don't feel as isolated or alone but never less it is a rare disease with no cure and it is sad to see how many kids still get misdiagnosed today :) Connor is fatally of the Steroids and all that is left is the Methrotrexate Injection each week! Silly how this has us all happy but after 4 years on Steroids, IVIG Infusions, Cyclosporin etc etc this is a huge success in his battle. I love how you mentioned swimming and I think I will look into getting them into a swim school this fall when the foot surgeries are behind them <3 I have one JDM friend (Grandmother to a little boys with JDM) who lives in Canada as well. I believe she is from Toronto but have to ask her. We talk thru FB all the time and she always tells me how good the medical treatments are in Canada. We get good treatments here but everything comes with a very high price tag.
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