I read your note in the carrier moms section, we faced the same choice you have to make, but decided to have another child. There are a few options for ensuring the result that I trust you are also aware of, if not please send me a reply and I will forward you all the info I have, (it comes from PPMD - called Lauras choice).
I remembered you joining, and thought how lucky your son will be one day with a nurse mom, knowing how to manage medical issues. I also yet again looked at your photos and am amazed how beautiful these children are. I have yet to find an "ugly" DMD boy.
Thanks for the reply. You are right there seems to be a fair amount of families with health care related employment.
Right now I am swimming in health issues- my Mom has terminal lung cancer with brain metz. She is sliding downward quite quickly. We moved her to our home town in July. Between my sister and I (as my brother) doesn't live nearby, we are trying to keep her as indepenent as possible but this last week or so has been very sudden with regards to her cognitive function and her general strength. What can I say except that she was very healthy and active until May this year.
Curtis lives about 2 hours away so we have been trying to have him down to visit when possible. Email works well, and they talk often.
Next week I plan on taking Curtis and my daughter Jenn to Victoria (on Vanc. Island) for a few days. Curt has a number of friends (all with either DMD or BMD) there that he met over the years while on respite visits. All these fellows were in a Pediatric facilitiy when they first met. some have passed on which is hard but the core group still stay connected. He is looking forward to seeing them. Hope the weather is good as it will be like a mini holiday.
regards, Robyn :)
My name is Tina. I'm also a Registered Nurse. Our family lives south of you, in Maryland. My sister is an RN also and works at the ER dept. in Phili. God love her!
Where is Kempton located in PA.?
Anyway, I read your note pertaining to botox treatments. I'm prettt sure this form of treatment is contraindicated for boys with Duchenne. Please don't let them do this to him until you find out more about this. Have you spoken to your son's neurologist about this?
Never heard of the botox injections... Maybe you should post the question on the main board? This is another way that being a part of the PA group could help. I wish I could help you with the botox, but can't- the main page and the PA board may have some folks who know and can get you an answer right away. I'll check Julie on a private message to her page...
Back later.... Joanne
You will definitely be on the right track... Ryan and the staff will give you the contacts. This is a very caring group of people and the emotional and cognitive issues are looked upon very seriously- you need to know if this is connected/how it can be helped either way, if yes or no...
Have you joined the group of Pennsylvania families?
I asked my very good friend Julie to give you a special welcome. Julie knows so many people and is full of resources so don't be shy!
Don't forget- I know that it is the beginning of a school year- Brian Denger knows his way all around this and what you are OWED.
Please stay in touch and we will definitely get together next time you are in CT!
I am from California. I am sorry your child has dmd. The diagnosis as you know is a rough one to take. This community is pretty good and supportive. I hope you find it helpful as I have.
I would check out the advocacy section under the Discussion Forum. Advocacy with our government is the one thing we can control and do to help bring in money so we can get more dmd research into NIH and CDD for education and awareness.
My dear and good friend Joanne has posted to you. Joanne is one of the first people I met when my son, Nick, was diagnosed. Our sons were diagnosed around the same time. NIck is now 16 years old. Nick was almost 10 years old when he was diagnosed. I have an older son who does not have dmd.
I wish you all the best and if I can be of help please let me know.
Jess, Have you found the 'Pennsylvania Families' on the main page. Thought you may want to join and talk to folks in your area.
Sometimes you need to zero in. Most of the time I'm in the mainstream...