Good! Thanks for writing back so quickly. I love looking at your pictures and seeing Luke enjoying the great outdoors! Joseph is on his 2nd wheelchair and I tell you, him getting to be a "boy" is completely out of the question. Your family looks like it has adapted very well :-)
I just joined the Duchenne Parent Helpline and Facebook page this afternoon. I am so thankful and grateful for parents like you that have energy and strength to inspire me. I'm really looking forward to reading more of your blogs and learning more from your journey. My son, Joseph, just turned 13. We were introduced to the horrible word, Duchenne, 7 years ago. It feels like it was just yesterday, but I'm always amazed how time has flown and how much things have changed since then. My husband and I haven't really reached out much since the diagnosis, but I now feel like it's time to surround ourselves with parents that understand what we feel and go through on a day-to-day basis. I've met a lot of people on Facebook who, just like you are doing so much to work towards getting rid of this disease...it's very inspiring!
Hi Misty - thanks for the response about the names and Glenallen. You had said there were about 42 boys with DMD in that area. Wow - that's alot. I don't even think we have that many here in Seattle and it's a big city! Your son is a great guy! I hope that heart rhythum thing & weight loss will resolve itself soon. I know a cardiologist down here said that most cardio issues can be controlled with meds.
Keep us posted.
I am at my son's right now looking at the PPMD site with him -this is so cool seeing the other individuals with the same, I think it puts a lot of meanimg to not feeling alone in that there are others "out there". Your photos are incredible Curt was amazed at your son on the big machine. He loves to go to see the off road races.
I have a son who is 51/2 yrs old with DMD. We adopted him from birth. I know birth mom is from Alaska - I think a town called Glenallen. Is that any where near you? The birth grandmother says that they don't have DMD in family history. Dr. Falligan @ Utah Uni. says that one way to know about progression is to know about family members. Just wondering if you would know about the small town of Glenallen and an individual by the name of Tami Jendra or Karen Lukkonnen. Char Burke - email firstname.lastname@example.org
I am "new " to PPMD although this neuro muscular disorder is not new to our family! Curtis was diagnosed at 13 months and here he is at 31 years old- it is nothing short of amazing. this is both physical and emotional...
The emotional language goes with out explanation regardless of or son's ages. I believe there is added strength from individuals who truly understand.
I hope you were able to read over the article I wrote last year about the "Season's of a Son."
Hope I can get to know you better real soon-Robyn :)
You mentioned a high heart rate, is your son on heart medication? It sounds like you are keeping an eye on his heart function and his oxygen levels are good. If he is not on heart medication I would for sure get him started on them as soon as possible. If you have all the bases covered then you've done all the right things. I know it's hard to do but, try not to worry. Worry will rob you of the beauty of today. I will keep you and your son in my prayers. Take care and God Bless.
Thank you so much Misty for your comment. I cried and my son over heard me. He said "Are you crying, Mom?" (He said it like I was a complete idiot for doing so..lol) I said yes but its a happy cry..a very nice lady left me a nice comment. He wanted to know what you said and I told him I don't think you'll get it but I told him anyways. He just looked at me...I tried to explain it and he still just looked at me and finally I just had to laugh! Your comment couldn't have come at a more needed time. I received an email from my husband in Iraq and because nothing is being done to send him home because of my back and the lifting required for our son, he lost it. Threw his weapon down, ripped off his rank and the American Flag off his shoulder threw it down and told his superiors that he quit. They could kick him out, send him home, he did not care. All he cares about is getting home to his family and taking care of us. I think they are going to kick him out of the Army. I've called agencies, a tv station, wrote a letter to our congressman, contacted the Inspector General for the Army and nothing. We've sent 2 Red Cross messages with two different physician's notes recommending him returned home, and a recommendation from a chaplain in stress management that my husband saw in Iraq recommending him to be returned home for his family and nothing. Needless to say, I've been an emotional wreck all day. So yes, your comment, I so needed it. By the way, you have such a beautiful family. Congratulations on that marathon too! I quit running the day I quit the Army...lol. Hope you have a wonderful day.
HI misty, I am writing to you from south africa and also have a son with dmd who is 16, i am also 38 and Jarryd my son has the same wheelchair as your son , so we are pretty similar. I have many times needed to chat to someone who is in the same boat at the same age, and have not really found anyone so that is why i am writing to you. I noticed in some of your photos, your son has a strap around his chest to help him sit up, I have searched for one of these for ever and never found one and would like to know where you got it from and how much it is so that i can order one for my son who needs one for driving in the back of my car because he feels unsafe and never stops shouting at me when i turn a corner or go over a bump. My son is not on steroids, and i would like to know what you give your son on a daily basis to help him fight this disease. Love to hear from you
ps are you going to the conference this year