Sorry to take so long to get back to you.
The CNA (Certified Nursing Assistant) program is great. Is Jacob on Medicaid? As far as I know, Medicaid is the only insurance company offering this program. A child with DMD can qualify for 'x' number of hours per week (We get 42 hrs.) of CNA care. Medicaid with pay for that care. Some where along the line someone figured out that a relative would be the best caregiver. I took a CNA course, passed, and am now hired by an agency as Zak's caregiver. I know this info to be true here in Colorado, not sure about other states. Your best bet would be to either contact your case worker, if you do have Medicaid, or a company that provides CNA services to see if they participate in a program like this. The place I am hired through paid for the class ($900)...I do know that if you pay for the class up front you can get reimbursed by an agency 6 months or so after being employed...they get reimbursed by the state.
I hope this helps.
I can tell you as a single parent, sometimes it is easier not to have to work on the relationship part. I am sure it is awful to have to lose your marriage, but I know that in the end you and Jacob will be better off. You will be surprised at the bond that will grow between the two of you...Zak is very protective of his single mom and has threatened to run over anyone with his wheelchair who might upset me.
I also only have a high school diploma. I did take some college, but it was too much. I had Zak at 18 and with his diagnosis and life in general, I couldn't make it all work. Don't let being 58 hold you back! It may not always work in your favor, but that just means you have to prove your self even more, which will make you that much stronger!
I know it's not always sunshiny and roses, but it has to get better for you. If we didn't have crappy times, we would appreciate the little things and the great things so much less.
Good Luck with everything and shoot me a message anytime...I promise to check my 'page' more often.
Good to hear from you! Jacob just turned 8 on July 15th. He is growing up way too fast!!
Donnie moved out on 01/01/09 and our divorce was final last month. It's hard now being a single parent with everything going on, but Jacob and I are adjusting.
Jacob has been on Deflazacort since July of 2007. He started out on 15mg but his dose was reduced to 7.5mg due to his small size. He hasn't had any side effects, thank God. It doesn't increase his appetite but that could be because he's also on Stratera for ADHD which is an appetite suppressant. He's weighed 36 pounds for almost 2 years. We order his from England, where are you getting Mati's?
How is Mati doing? Jacob is doing well but not seeing anything different yet since taking the real stuff but I have faith that we will!!
Gotta go and finish cleaning house. You guys take care and God bless.
I am so glad to hear that! It is exciting!
Mati will be 9 in October, I think that's about Jacob's age too, isn't it?
Yes, he is an only child. We got used to the long travel, and now we only have to go every 3 months, which is much easier.
You know, we are just about to start a treatment with Deflazacort, which makes me a little nervous about the side effects. I am especially concerned about any possible effect on his temper. But Dr. Wong really recommends it, so I hope it will be a good thing for him. He has never taken any steroids, so far. Has Jacob?
God bless you too!
It's great to hear from you. Jacob and I just got home today from our trip to Cincinnati. He took his first dose of the real thing yesterday. We are so excited!!
Maybe it just takes longer than a few months to see a noticeable difference. How old is Mati? He is such an adorable boy! Is he your only child? It has to be very difficult for you guys having to travel so far.
I hope you'll keep me updated on Mati's progress and I'll do the same with Jacob. It helps being able to talk to parents of the boys in the study.
Talk to you soon and may God bless you all.
Dear Donnie and Linda,
Sorry for the delay, we were on vacations! Of course I remember you, how is Jacob?
Mati has been on the open label phase since late March. I really don’t see any changes… I wish I did! But, on the other hand, he is not doing worse either, which is good considering this is a progressive disease. Also, he has not had any side-effects whatsoever.
I wish you the best for this new phase! I suppose Jacob has already started it this week...