Thank you Rhiannon for your lovely comment :) Left behind brought the Holy bible and scripture to life for me, love the Tsion character. A few things don't match with my understanding of the book of Revelation but overall fab series. I read them all as e-books, ate them up in reading terms lol Hugsss Ian
I loved that story and when I read it I laughed and immediately thought about Italy being a trip and not a vacation. Girls are higher maintenance on the emotional front.... But I love being a mother.... I would love a few more. But--too old---and too scared to try again. I am glad I made you smile.
We walked our walk, no pun intended, for 15 and a half years. John was diagnosed a little before he was four--in 1991-- and lived to be 19 and a half. Things were so different then. You should have so much hope for something wonderful to happen concerning the disease. I look at your little boy and that is what John looked like, no kidding. I could send pictures of him when he was little and you would go hmmmm. I have found over the years that Duchenne boys have two looks, pretty much. We have met many, many families and they either look like John and your son or have a rounder face with dark hair, usually. It is funny. I guess that is the part genetics plays with certain diseases. I know your son will have a wonderful life and remember God gave him to you because he knew you would help him have a great life. He doesn't just pick anyone to give a Duchenne boy to. My best wishes are for you and the family.
A little funny aside from a post I see here about planning a trip at birth and when you find out that your destination has changed. We also have two girls. I want you to know that "Holland was a great journey with John." But Italy isn't all it is cracked up to be with the girls :) I think Holland was easier :) If you ever have questions, etc....drop a note. But know I pray everyday that no other family has our DMD outcome.
I just finished reading your article on advocacy. I am crying....wonderfully written. I don't know if it is for you or because I could have written that article just about word for word as we were on our journey with our son. Keep on doing what you are doing. My prayers are with you. I wish you all well. The wonderful will far outweigh the bad. Sometimes when you are living it it may not seem so but it will. Bless you all.
No, I'm not on Facebook, but my husband Paul is. I keep saying that I'm going to get an account, but have yet to get around to it. Sorry it took me a while to respond. I'm still reeling a bit after the discontinuation of the Ataluren trial. Ugh... Remember we said, just when you think God can't dump anymore crap on your head...bam, another load full. We're trying to stay positive and hope and pray that something pops up as they further analyze the data.
Great article on advocacy posted in the March newsletter by the way. Very well-written and well-expressed.
How are the behavior issues going with Riley? We have had quite a few things creep up starting about a year and a half ago. He had been on steroids for about 6 months at that time. Mentioned this to our Dr. at CHOP. He told us to wait before we start moving with anything. Issues did not subside. More issues in a new school this year. Had him evaluated and came up as at risk or clinically significant for lots of areas (ADHD, anxiety, OCD, asberger's). We are now going through Children's Hospital of Phila's behavioral health dept. to see what they recommend. It's not an easy road. One of the best things that happened was Elliott working with someone from our area Intermediate Unit this summer. She gave him a great strategy to manage his anger. It goes along with a book and he needs to practice "turtle" (a turtle in the story has some anger management probs :) To practice turtle he needs to stop, explain the problem and then say how the situation made him feel. It was not instantaneous, but over timed it worked. If you are interested, I'll get you the name of the story. If I can help in any other way, please let me know.
Rhiannon- What a pleasure it was to see you again, and to get to meet your husband Ray at the conference in DC. I read your bog post from 6/08. Awesome!!! I have felt that way about 1 million times. Hope you are well, and that we see you soon and that you had safe travels back. Go Red Sox!!!
Sorry it took me so long to reply. We have been very busy over here int he 110 degree weather of Arizona. Im getting closer to my due date and we just got back from vacation in Wyoming. So here is the latest on Michael....We went Dr. Wong back in April. She believed Michael to be Becker. We were very excited to hear her say this. So we went ahead and agreed to do the muscle biopsy. So, we went back in May to have it done. Got the results (today) and it is confirmed he has mild/moderate BMD. I am wanting to talk to Dr. Wong to get all the details of what this all means. So I hope to know more in the next few days.
On another note...did you go to the conference? If so, fill me in. How was it? How are you doing and Riley?
Just checking to see if you are going to the conference. I would really like to meet you in person-you don't know how much you calling me helped me. I eventually would have heard of dr. Wong, but not as soon. We saw her in April and are scheduled to see her in December. Talk to you soon, Kim
Good to hear from you. I am following off the PPMD map too. I have been thinking about the conference too but money is not plentiful. I have someone to be a room mate for Friday and Saturday and just not sure if I can afford the expense. My husband is a state worker and we expect him to be furloughed any time. It is great to hear from you.
Rhiannon, I am honored, please feel free to use any of Cory's pictures. There are many more where that came from (who among us can delete pictures of our kiddos). I am interested in how things go with your efforts so please let me know...Thanks
Just want to drop a note and say it was so great to meet both you and your husband in DC last month. Sorry for the delay in making contact. Seems like a lot going on all the time. You are doing really great things to help other families. I wish I could have spent more time visiting in DC then I did. This year I took in more quiet time for myself then I usually do.
Rhiannon- It was great seeing you again in DC. I'm so glad I was able to go. I will definitely be back next year. I just had to let you know that the story you shared about your Dad and what he said about Jerry Lewis is one of my new fave stories to tell. Too funny! You have to keep laughing somehow, so thanks for bringing some laughter my way. Take care.
Hi Rhi, Don't worry you didn't offend me at all I totally understood where you were coming from. Since I sometimes also grieved Dylan when I still had him. Thats the part where I don't know what to say about sometimes, there is nothing easy about DMD. I just try not to be a downer for other parents like yourself because we all need to have hope that a cure will soon be found. Athough my Dylan is no longer with us this has become my misson, because I will saddly admit that I lost my little angel to an awful disease that I knew nothing about and honestly it shouldn't be this way. Not when so many beautiful little angels are being affected. Am so glad you wrote back and hope to hear from you soon.