thank you for your comment, we need some help, we are trying to decide to go to UC Irvine or Dr. Wong, ? so many different opinions from different parents? If you have a chance to talk I will greatly appreciate it, thank you
Oh, since I am out of that loop I hadn't heard. But it is better to be safe than sorry. John would have cried all week. He LOVED it. But since it does attack the lungs that definitely would not be good. I will have to remember to ask next year. I hope all is well with you and the family. Take care!
Hello---we chatted about camp several months ago. I was wondering how it went? Did he have fun? How did you do? I hope it was awesome and you had a nice break. IF you get a minute, let me know. I would love to hear all the details. Have a great day! Kim
Kim - I got part of my private message through to you, but part 2 keeps getting a timeout error and won't go through. Send me a message with your regular email and we can continue the conversation. Thanks, Keith
Thank you. Johnner's progression was fairly swift comparing him to some of the other boys we met. At seven he was very contracted and had cord releases and tendon transfers and went into long leg braces and a manual chair part-time. He walked in the long leg braces for the next four years. He did well in the house or inside but outside it was really difficult. He would get tired but we went his speed so he could enjoy his life and live it just like he wanted to :) We say we got to smell the roses thanks to him..... At 11 he "sat down for good." That still breaks my heart. But shortly after this he got his power chair and it was FABULOUS. He had independence and we had to run to keep up with him. The next few years were really good. He was getting around, living life, and having fun. Then he started to have lung function issues and the lumbar lordosis started. He had spinal fusion, rods, at about 14. That was really hard for him and if I had to do it again....I am not so sure it would be done. My own opinion. He did bounce back and was pretty good but the lungs kept failing and then his heart was getting weak and cardiomyopathy started to set in. So lots more pulmonology and cardiology appointments. Johnner had decided early on no feeding tube/ventilation. At 18 he had all of his medical power of attorney and DNR paperwork done. We always said he was the man "driving the car" and we were riding along....it was hard for him to make the choice....he was getting tired. In the spring of 07 he got REALLY sick and his lungs clogged with mucous. He did not want to go to the hospital. At this time we had lots of nursing hours at the house.....we took care of him and got through this. He lost 30 pounds in three weeks. It was so hard. But he pulled through and the last 15 months were rough. He was so tired, weak, couldn't do what he wanted....but we had a great time doing what he could and loving every extra minute we had with him. We brought hospice in and it was a really good thing. He had a stroke, July 2--his dad's birthday-- at the end and that is how he went, the next day. I miss him so much. But I am blessed to have been given Johnner and he was hear to teach us lessons. I hope we were wise enough to learn them. Ask me any questions you want to and I will be happy to answer, etc. I know it is rough....but as I was told a zillion times you are given only what you can handle....I wondered why God thought I could handle it....it is because he knows DMD boys need extra special families....you must be awesome, too. Take care.
Hi Kim, What type of Scooter does your son use? Our OT has recomended the gogo elite and the lynx. The one we choose will be modified to better suit a child.These are light and transportable due t o the modular design. Sam is only six but we don't want him to tire himself out walking long distances. Sam is still steroid free but that probably won't last alot longer.
Thanks for letting me know. Aidan is 5 1/2 years old. I hope this doesn't sound terrible, but I have seen so many boys around Alex's age and older who have been on steroids for years, and it is very hard to think about Aidan looking that way. Alex looks so great that I was thinking that if he's on steroids that it gives me hope, if that makes any sense.
How is your younger son doing? I remember you being concerned about his speech? I hope that all is well.
Two sites I recommend for SPED information are Wright's Law: http://www.wrightslaw.com/ and NICHCY: http://nichcy.org/Pages/Home.aspx
I believe boys with DMD require many different services than other child who need SPED that their plans are truly individual making an IEP necessary.
Please e-mail me directly with your questions as I may have more information: firstname.lastname@example.org
Hi Kim! Thank you for your response to my post! We are planning for Nathan to go to cam this year. I'm learning that there are different districts. We are in the Susanville district. Where will Alex be going? I'd love to get the boys together regardless. . .I think it's important for them to have friends that they can relate to so closely!