Hi Penny. Awhile back you asked me about my son's service dog journey. I came across this video on facebook this week and wanted to share this link to a film about Canine Assistants. http://www.pbs.org/dogs-eyes/film#
Are you talking about the conference in Baltimore? That would be nice to go to but I can not afford it. I grew up in Rancho and graduated from Valhalla. My father still lives over there. Thank you for your kind and caring message...it has been very rough these past few weeks and would be nice to know some people going through the same things.
Hi Penny. We submitted an application for Bradley to get a service dog about 3 1/2 years before he actually got to go to a 2 week service dog camp but the time finally came around and we were able to attend in Sept. 2008. Canine Assistants in Alpharetta, GA covered all expenses involved with the trip including flight, hotel and food, not to mention getting the service dog and the costs of the two week training camp. It is a wonderful program and we are very happy to have Sky. She is a Golden Retriever. The hard part is getting home and continuing the training process. Sky is great in public places. We can go to a restaurant with her, have her go under the table and when we get up to leave people are just amazed when she comes out from under the table. This is because she is very well behaved. But more than anything she is a companion to Bradley which is very therapeutic for him. She goes with us to church when we attend about 3 times weekly but other than that, we don't take her out much. She even went to school with Bradley for awhile but after doing that for one year, the day before he started 7th grade, he decided he didn't want to take her to school anymore. I think he felt having her drew more attention with other students at school.
I believe Canine Assistants is a great place to apply for a service dog and I wish your son all the best if that is the journey he decides to take. We would do it all over again.
All but one child in my family is adopted and that includes John who I met when he was four. Although I tried to take John's feelings into account, I reserved the parental right to make decisions when they seemed necessary based upon input from his PT/MD/OT... And he loved red!
Hey Penny I just read your comment on my discussion on depression.Cody seems to be doing better but goes through spurts where he seems depressed. He doesnt feel like he has a lot of friends either because most of the boys play sports.Cody loves sports especially football and wishes he could play so bad.He feels left out alot with the other kids and is having some issues with some of the kids telling him he is fat and lazy. Cody takes prednisone and has gained alot of weight and kids can be very mean.That is very painful to watch as a parent. But he just had his MDA clinic visit and all in all Cody is doing well. He will be 11 in Jan and is still getting around pretty well. He uses a wheelchair for long distances.I just keep praying that a cure will be found in time. But I just take it one day at time.
it is scary that he went under water and couldnt get out, austin has had a harder time in the water lately as well. swimming is so good for him that we have him get in the pool daily, but under very close adult supervision..they really do need to be watched carefully, as the disease progresses they may not know what they can do on their own, so injuries can happen.
penny, i just got your comment on my blog. austin is 11.5, and stopped walking at all very soon after i wrote that blog. he is totally wheelchair bound, and my advice to you is let your guy walk as much as he wants, we always let austin decide when to use his chair. we did insist he not walk stairs, up or down, and we wouldnt let him walk long distances, because he got so tired. but the thing is, they will lose the ability to walk, and i believe you should let them walk while they can. also, austin was upset when he could no longer walk, but he was glad to not be falling anymore. he is also so much faster, and has more energy now that he has his power chair to get him around. i am sorry you are going through this , i know exactly how you feel. take care, jenn
I noticed in your post you said your son had dental work. Did he have general anesthesia? Was it inhaled general anesthesia? Our boys with dmd should never have inhaled anesthesia. They are at increased risk for malignant hyperthermia and it can be fatal.
I was buying a antioxidant drink called Miracle Fruits of the World. It's a vitamin juice and it helps keeping his muscles soft, especially his calves. We notice when he doesn't take it for a few days, his calves start hardening. Here is the website: http://www.drinkables.com/oldsite/mfotw.html
Other than that, we buy Vitamin D3 1000 IU's and a chewable multivitamin for kids at Frazier Farms (a store similar to Henry's, Sprout's, Boney's (they are all owned by people in the same family)). The final vitamin we give him is one chewable kids Calcium 600 mg that we get at CVS.
Micah is still walking. He is pretty flexible and still has decent strength.
Hi Penny, Micah turned 9 on May 5. We live in Vista, 30 or so minutes north of you. Micah has a power scooter that we got him when he was 5. He uses it whenever we go somewhere that involves lots of walking (Disneyland, Wild Animal Park, camping, etc). Reading your wall above, Sounds like you experienced the wonderful MDA clinic of Rady's Children's Hospital (sense the sarcasm?) If this is true, I can understand the pain they have caused you with their lack of knowledge on Duchenne and the care that is needed to help our boys. We take Micah to Cincinatti Childrens and the care is top notch. They are one of the top 3 clinics in the nation, if not the best. UCLA is opening a clinic this summer that will emulate Cincy, so let's hope the Clinic Director/Neurologist will be as good as the one in Cincy. If you have any questions, feel free to send me a message to my Inbox and I will do my best to answer them and give you suggestions.