Well again dmd is trying to take our spirits. I found out this week my jacob is losing lung function his lung arent even working a 100% if u add them together. He is inhaling at 60% and exhaling 35%. How is this even possible? Count yourself lucky that ur jacob is still getting around good and all. It seems like once we think we are ahead of whats happening we fall about a mile back. He has lost hand strength and can barely write now. Hes so weak i dont know how he does this bc it is killing me just as fast to watch and try to help.
Hi Jacobs, Thanks for recommending a Mum in America, I'll see what comes of it - however I am fed up with "internet" friends and need to connect with the real world! Facebook is taking over every bodies lives here in the UK so not many people come on here any more - your only the third in 9 months!!! I know of Danielle but have yet to have contact with Lorraine. Thanks for the info and I wish you well - C xXx
We moved back to California last February. We hit the road on Valentine's Day and drove so we could keep ahead of the storms. What an experience with 2 dogs, a cat, a rabbit, 3 wheelchairs, 2 shower chairs and 2 hoyer lifts in our 2 vans. Thought we would get stranded by a snow storm in Flagstaff, but found the adrenaline to push on through to Kingman, AZ and the guys had their first In-n-Out Burger in 4 years. Yum. Checked out about 80 houses before I found one that had enough space to modify a bathroom so there was enough room for the accessible bathroom.
Hope you and Jacob are well. The horseback riding photos are great!!!
was nice to hear from you. I sure wish I had heard from you sooner. I am sad to say that Dennis went to live with Jesus in heaven on June 27. He died at home and I was not prepared for it. He had not been feeling well and I took him to his doctor and also called his cardiologist . No specific co's, just not himself. It was aweful. I wish now I would not have took his doctors word but went with my gut feeling that something was not right. Although Dennis only lived with us 18 months, he was our family's world. Every day revolved around him.
hey Donna - christopher is doing well...stubborn which is working well for him :) how is Jacob? have not really been on the website much as i am really sure how to get around on everything :) was that you from berk?
Thanks for sending me a note. I'm not aware of any family in the Lansdale area...but there's no doubt a relation. I'd recenlty been made aware that my father, from MA, used to drive his mother to the Lansdale area fairly regularly. I'm trying to learn more about that and will keep you posted if I establish a connection.
We've been in PA for 9 years now but the balance of my family are all up in MA.
I feel the same way. We are closer to clinical trials but NOT to helping the boys. Even if they participate in the trials they might be in the placebo group or low dose group and that would not help at all... not to mention that these are safety trials and still do not have approval to start.