Just wanted to leave you a quick comment.  The groups are great.  Really impressive the amount of work you have done for your son.  I am now living only to find ways to help with limited resources.  I have had a fall out with Loma Linda for obvious reasons.  They misdiagnosed Matt in 2005 and now I go to a clinic that has absolutely no services.  I am also not in a talking relationship with one of main woman over at the OC MDA office.  While I am the common denominator, it is simply my inability to allow my son to be a number.  If someone can look at a child that is being ripped apart and not feel any compassion, then I'm not going to get along with them.   I have left every appt at Loma Linda feeling worse that when I arrived.  Why isn't he suggesting supplements?  Why didn't he suggest meds for his stomach issues?  My ex wifes son is 13 and in two years has never even had an EKG??  I tried to get counseling and they send in a very nice girl, but in her early 20's and busy in college, so unable to connect with her...  I can't believe that families get left in these situations, but I am seeing it all the time when I meet them...Hope we can talk and hugs to your boy...I hurt for every single one of these kids

Was hoping you knew a little about the Children's Hospitals in L.A. and O.C.  I am in contact with OC but have heard good things about L.A.   Im easy to reach at facebook...Living with duchennes muscular dystrophy or Mark Perrotte..Take Care

Hi Christian Its late and I just need to talk to someone Caleb went to pt today and had his 3 month check and he has declined very very much the therpy gal told him he needs to be in his chair all the time.he answer is not ready yet not ready by now my heart is crying and I want to hold him and tell him ok next week next year however he is no longer safe getting on the bus my older daus say just put him in the chair and not give him a choice. what they dont understand is Im not eitherready that is. That darn old love gets in the Im sorry to tell you my problems but Im not sure how to post so everyone sees it and can respond It late and typing skills are tired hope this makes sence thank you oh yes I have a bottle of fruits around the world he would not drink it this bottle is not opened if you want it I will sent it or meet you somewhere to give it to you let me know Penny Hauer

could you please let me know the name of the vitamins . you get at cosco. is Micah still walking? thanks Penny

Christian I have a son Christian who lives in chicago and Im from Ohio Akron I would very much like to take Caleb to MDA clinic there information would be greatly appricated what I really want you to know is how much Caleb and your son are phyically alike from the back its unreal the build is so alike Caleb is still walking but falls everyday and his knees look like you know bad my hope is we can get together soon cause I really want to get him to Ohio. money is a problem as we still have 18 kids at home and its hard but sometime you put first things first Caleb is my first I need to get a better handle on what to do a this stage in his life school is getting to be a problem how to get what he needs my other childre had cp and 5 have downn sym their problems are very different I love my children the same vut Caleb is just so very special we are very close I know you understand how hard it is to watch everyday the decline of body thank you for answering Penny

Christian, It was great meeting you at KFAC. I would like to talk more if you are up to it. lwilhelm@cox.net. Thank you again. Lindy Wilhelm Jacks nana

Hey Christian,

We are all doing good, how about you and yours? Is Micah enjoying school? Are you still doing the long journey to the OC? Thanks for checking in on us. Take care,

Mary

Hi Christian,
Yes, I did write a letter seeking coverage for out of state services. Please e-mail me at brian@parentprojectmd.org and I will look for the letter and send you a copy Wednesday or Thursday.
Brian

Yea last night I went for a tour of a few things ,
Thankyou so much for helping me and I am so glad I found you guys again That wife of yours is surely an angel,she has helped me so much.

I think the new group you started for Drug/Supplements Journal is a fantastic idea! Since my grandsons are only 4 1/2 and 3 years old, they are not on a lot of supplements yet, but my daughter and son-in-law would definitely appreciate and benefit from a group like this so they could learn from it. I hope everyone joins in. Thanks for starting this. Terry Porcaro (Grandmother to Cole and Jack)