Karen Barnett's Comments

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At 5:19am on December 8, 2010, Julie Garcia said…
Hey karen!
At 1:28am on August 31, 2010, Char Burke said…
Hi Karen - I was just wondering how Daniel is doing? Do you have him on a low dose of deflazacort or completely off of it? How about his bi pap - any luck in getting him to use it? What about the walking - how's he doing? Did you guys finish your remodel? Will broke his wrist when we were camping so he has a cast now...it's his dominate hand so am worried about that. Let me know how you are doing. Char
At 12:35pm on November 27, 2009, Shellie Phillips said…
Hi Karen,

Thanks for the add! I look forward to checking out the Michigan group. We just moved back a month ago and looking forward to connecting with others in the area.
At 2:39am on November 12, 2009, Darcy Tumminello said…
Karen,
I noticed your previous post about ODD. We may be dealing with that.
What has helped your family deal with this. Are there any supplements that will help ?

Thanks Darcy
At 9:47pm on November 5, 2009, Jenise Furman said…
Sorry it took me a few days to get back with you. I have just submerged myself into research. How long have you known your son has DMD? We just found out about 3 to 4 weeks ago. I have tried for a few years to tell the doc that my child did not move like he should be...chalked up to traumatic childhood (he came to me as a foster child in 2006) then it became just a confidence issue. I am glad I did not stop trying to figure out what was going on with him. I wish with all my heart it was not DMD. I thought they would tell me they could fix him with special shoes or something like that. Now I am trying to make sense of all this.
At 5:56am on July 28, 2009, jean torrance said…
Hi Karen,
Yes we live in the big city of Pinckney. Nick has a cough assist and it is wonderful - as far as useful equipment goes. He was scared of it at first but now asks for it when these newly formed allergies flare up. Nick had scoli surgery last year and we are doing those sleep studies at U of M as well. We are doing o.k. - I did go to the PPMD conference in June and was overwhelmed by all the info...in a good way!
At 1:08am on June 17, 2009, Julie Garcia said…
Hey you!!! I hope you are doing well...talk soon
At 10:51pm on June 15, 2009, Janine said…
Hey I think I accidently deleted your reply to me. I was getting rid of some of the comments when I got to the second one which I thought was the first I realized I deleted something without reading it. Did you by chance respond to me about when I asked how your son's IEP went? If you did I'm very sorry but I didn't read it. So anyway how did it go? Feel free to totally ignore me if you would like
At 11:40am on June 14, 2009, Janine said…
How did your IEP meeting go with the advocate present?

Janine
At 7:43am on May 18, 2009, Janine said…
No problem Karen. I can understand the school issue being a sensitive issue for you. It is not something we have had any problems with and I really can't even imagine having to deal with all that on top of the dmd. All of our dealing with the school have been how to make it easier for him to get around and thankfully he is in eight grade and we have never had any problems. Of course as a mom I worry about him going to high school next year.

I hope your next IEP meeting with the advocate coming with you goes well. Having a person helping you that is not emotionally involved can only be a plus.
At 11:00am on May 9, 2009, Char Burke said…
Hi Karen - Will just had a sleep study too. Can you share what the outcome was of his study? Will's got an apt. on Monday (upcoming) to find out about it.
I have noticed that late in the day, he signs or breaths harder - when exhauling. Not sure what is going on. Have you experienced this with Daniel? I am sure it has to do with DMD. It's not every day and not all the time but we have noticed it.
Happy mother's day.
Char
At 6:27pm on April 22, 2009, Ian Anthony Griffiths said…
Hi Karen, Thanks for the friend add. Its cool to discover other artists! If you want to see my work, I have a deviantart account with my gallery, heres my page, http://thebigg2005.deviantart.com/gallery/ I do alot of computer wallpapers, I paint with painter IX, and I draw on adobe illustrator. What kind of things did you do? Ian
At 12:25pm on April 22, 2009, Ian Anthony Griffiths said…
Hi, Im Ian, how are you?
At 5:01pm on April 19, 2009, Julie Garcia said…
Hey Karen,

I do understand. I tired to call your home number and got a busy signal so tried your cell and it was not set up for messages it said....so we will catch up. Just know I am thinking about you and holding all positive thoughts.

Take care and I will try later.

Julie
At 3:16pm on April 19, 2009, Julie Garcia said…
Hey Karen!

I hope all is well. I want to catch up with you and plan to do so soon. It has been hectic and this morning I have been clearing some e-mails and that.

Take care
At 12:12pm on March 31, 2009, VELIA said…
Really beautiful your children, artists seem, God has blessed you with these amazing children, go ahead and look after a lot. Hugs and God bless. Velia mom's Joshua
At 12:31am on March 24, 2009, Tamara "Michael's Mulisha" said…
We are staying at the Hyatt. Any word on that place? We chose that place because it had and indoor pool too. Michael is a fish. I would love to cross paths with you. Keep my number and call me while you are there. 623-670-3575. Thank you for the exon info too. Is you r son on steroides? Can you tell me what your son is going through right now?
At 11:30pm on March 23, 2009, Tamara "Michael's Mulisha" said…
Im confused because when I met Pat Furlong, she said I needed 50. My husband and I alwasy thought it was 51 that we needed. I guess I will find out for sure when we see Dr. Wong. Yes we will be there April 6th - 10th. Our appts are the 7th and 9th. We are so looking forward to this trip. Have you gone before? What do I do or ask?
At 10:29pm on March 23, 2009, Tamara "Michael's Mulisha" said…
Hello, I read one your messages on another mom's page. You were talking about skipping exon 50. I think that is what our son needs. His deletion is 45-49. Please email me some info. Thanks!!
At 5:06pm on March 15, 2009, djamel fathi said…
Sorry,I DID GET IT ON YOUR LAST E-MAIL.
Didn't see it.
Thank you very much.

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