Comments on: Keep Calm and Carry On http://johannesen.ca/yesorno/2010/medical/keep-calm-and-carry-on/ Exploring the decisions and issues in raising a boy with multiple severe disabilities, who has no diagnosis. Wed, 07 Jul 2010 02:47:14 +0000 hourly 1 http://wordpress.org/?v=3.0 By: Louise http://johannesen.ca/yesorno/2010/medical/keep-calm-and-carry-on/comment-page-1/#comment-4678 Louise Mon, 18 Jan 2010 19:46:12 +0000 http://johannesen.ca/yesorno/?p=242#comment-4678 I'm sorry you're going through this. It does sound like a good thing to fully investigate the DBS -- for Owen and for all of you caring for him. Anything that would enable him to be more comfortable and make it easier for you to hold him. I wouldn't worry about scarring -- his curls will grow back over that. I was just watching the CTV video of you guys this morning and loved the interaction it showed between you and Owen. I think it ends talking about how this is a journey you are on together. And it sounds like finding out all about the DBS is part of the journey. Let us know what you learn! I’m sorry you’re going through this. It does sound like a good thing to fully investigate the DBS — for Owen and for all of you caring for him. Anything that would enable him to be more comfortable and make it easier for you to hold him. I wouldn’t worry about scarring — his curls will grow back over that.

I was just watching the CTV video of you guys this morning and loved the interaction it showed between you and Owen. I think it ends talking about how this is a journey you are on together. And it sounds like finding out all about the DBS is part of the journey.

Let us know what you learn!

]]> By: Barbara http://johannesen.ca/yesorno/2010/medical/keep-calm-and-carry-on/comment-page-1/#comment-4597 Barbara Fri, 15 Jan 2010 18:40:09 +0000 http://johannesen.ca/yesorno/?p=242#comment-4597 Willing you strength for what is a difficult process-to-decision. Competent medical care - whether pharmaceutical or surgical and scarring - is what I hope you find. I have more than passing familiarity with every procedure mentioned. The key for me in your position would be the physician - skilled and with a good reputation for competent skill in either cutting or dosing. Willing you strength for what is a difficult process-to-decision.

Competent medical care – whether pharmaceutical or surgical and scarring – is what I hope you find.

I have more than passing familiarity with every procedure mentioned. The key for me in your position would be the physician – skilled and with a good reputation for competent skill in either cutting or dosing.

]]> By: Claire http://johannesen.ca/yesorno/2010/medical/keep-calm-and-carry-on/comment-page-1/#comment-4593 Claire Fri, 15 Jan 2010 14:30:37 +0000 http://johannesen.ca/yesorno/?p=242#comment-4593 Jenn, I certainly don't envy your position...but you will do the best you can in the end and I know you will have done all the homework. If it's of any comfort, my daughter has a shunt...another "machine in the head" type of thing...it's worked well for the most part. We have not experienced infections or any of that sort of thing. There's also Dream Mom whose kid has a vagus nerve stimulator...and it's been OK for her guy. I think that sort of "machine" is safer than a Baclofen pump because it has no drug in it to spill into the body radomly, and can ultimately be turned off, quite simply (yeah, "simply"!) It looks like your guy has curly hair like my girlie...it hides the scar fairly quickly... good luck whatever you decide. Jenn, I certainly don’t envy your position…but you will do the best you can in the end and I know you will have done all the homework. If it’s of any comfort, my daughter has a shunt…another “machine in the head” type of thing…it’s worked well for the most part. We have not experienced infections or any of that sort of thing. There’s also Dream Mom whose kid has a vagus nerve stimulator…and it’s been OK for her guy. I think that sort of “machine” is safer than a Baclofen pump because it has no drug in it to spill into the body radomly, and can ultimately be turned off, quite simply (yeah, “simply”!) It looks like your guy has curly hair like my girlie…it hides the scar fairly quickly… good luck whatever you decide.

]]> By: Connie http://johannesen.ca/yesorno/2010/medical/keep-calm-and-carry-on/comment-page-1/#comment-4592 Connie Fri, 15 Jan 2010 12:15:38 +0000 http://johannesen.ca/yesorno/?p=242#comment-4592 Hi Jen You are a true hero in my eyes. I think about you and the boys everyday. I am moved about your decision. It is so scary opening medical doors but neither one of us has to tell the other that. Please know that we are here if you need us Love Connie Hi Jen
You are a true hero in my eyes. I think about you and the boys everyday. I am moved about your decision. It is so scary opening medical doors but neither one of us has to tell the other that. Please know that we are here if you need us

Love
Connie

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