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Rhiannon Traigle
  • 39, Female
  • Labadieville, LA
  • United States
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Rhiannon Traigle's Friends

  • Sherry Carpenter Larson
  • Athen's Page
  • Jeff McGee
  • Ian Anthony Griffiths
  • Cheryl Markey
  • Gisel Rivero
  • vicki george
  • Emma Jerred
  • Tamara "Michael's Mulisha"
  • Kulwant Pannu
  • Joyce Bergeron
  • Will Farr
  • Kimberly Damron
  • Kelli May
  • celeste and carey

Rhiannon Traigle's Discussions

Fighting the Side Effects

Started this discussion. Last reply by Lee Ann Faeth Mar 25, 2010. 17 Replies

Genetics

Started this discussion. Last reply by Ofelia Marin Dec 1, 2008. 17 Replies

With Your Permission?

Started this discussion. Last reply by Rhiannon Traigle Aug 11, 2008. 27 Replies

 

Be kinder than necessary; everyone you meet is fighting some kind of battle.

Latest Activity

Rhiannon Traigle replied to Brandy Sonnier's discussion Trying to reach out to parents in Louisiana:)
"Hi Brandy, I just happened to see this through my email. I don't come to the boards often. We have a group on FB for Louisiana families. Add me on FB and I'll get you in touch with our whole group! My name on FB is Rhiannon Tabor Traigle.…"
Aug 1, 2016
Sherry Carpenter Larson replied to Rhiannon Traigle's discussion Advocacy Conference in the group Louisiana and Mississippi Families
"Interesting!!!!!"
Oct 13, 2013
Kelli May replied to Rhiannon Traigle's discussion Conference
"Hi!   If there are any families from southern CA who would like to attend the conference, but can't, please call me or send me a message. As the Parent Outreach Coordinator for Duchenne San Diego (DSD), my goal is to identify as many DMD…"
May 18, 2011
Rhiannon Traigle joined Gisel Rivero's group
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Grief and Loss

For any parent that needs to discuss those fellings of grief and loss
Mar 24, 2010
Rhiannon Traigle joined PPMD's group
Mar 24, 2010
Rhiannon Traigle posted a discussion

Fighting the Side Effects

My 7 year old, Riley has now been on 15m of Deflazacort for 1 year and 1 month. He has just recently started having reactions to the steroid. He is naturally an extremely mild mannered child, but for the past two months he has been very aggressive, angry, crys a lot, is easily frustrated, and has an eratic slezeping pattern. And it is getting severe!! It is evident that he is frustrated with himself and cannot understand why he is behaving this way. I reviewed past post under this disscusion…See More
Mar 3, 2010
Rhiannon Traigle added a discussion to the group Louisiana and Mississippi Families
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Advocacy Conference

Wondering if anyone is considering going to the advocacy conference in DC in Feb. I went last year...the only person from Louisiana and it was one of the best experiences ever! My husband and I are going this year, just hoping more parents from the south would join us!RhiSee More
Nov 20, 2009
Rhiannon Traigle is attending Angela's event
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7th Annual Jumping Jack for Duchenne MD Charity Golf Tournament at The Ranch Country Club

June 28, 2010 all day
The Jumping Jack Golf Tournament was started seven years ago in an attempt to save the life of our now 9 year-old son, named Jack. It came after hearing the news that the genetic disorder he had, Duchenne muscular dystrophy would disable our lively, wonderful child by age ten, and take his life in his early twenties. The heartbreak and determination became apparent to all those around us as we quickly committed to increase the awareness of DMD and support the research that will one day realize…See More
Aug 21, 2009

Profile Information

About me:
I am a wife and mother, which are my favorite jobs! I am also a Licensed Professional Counselor. I am passionate about making a difference....I love non-profits, fundraising, and helping others...people think I'm crazy for devoting my life to this, but it's what I love! More than anything I love spending time with my family!
About my family:
I am married to the most wonderful husband in the world, Ray. Ray is the Captain of Road Patrol for the Assumption Parish Sheriff's Office. We have three beautiful children, our daughter Reagan is 14 and our son Riley is 11 and our baby Rhys is 2. My family is my life! Riley was diagnosed with DMD in January 2008. He has a deletion of exon 45.
Name(s) of child(ren)/individual(s) with Duchenne:
Riley Joseph Traigle
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Labadieville
State:
Louisiana

Rhiannon Traigle's Photos

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Rhiannon Traigle's Blog

Welcome to Holland

Posted on September 21, 2008 at 3:41am 2 Comments

WELCOME TO HOLLAND

byEmily Perl Kingsley.



c1987 by Emily Perl Kingsley. All rights reserved



I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......



When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans.… Continue

I’m Sorry…. I Won’t Apologize.

Posted on June 22, 2008 at 2:40am 9 Comments

Maybe it’s my southern roots or maybe it’s my line of work, but having an apologetic tone seems to be my norm. It is my nature to not want to hurt or offend and being raised in a community where not waving to a neighbor (I mean EVERY neighbor) in passing seems to cause offense doesn’t help my disposition. I am sorry when I bump someone in passing, or when I hurt a loved one’s feelings, or for any other reason I think I have done some injustice to another living being. In these events, I… Continue

Comment Wall (139 comments)

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At 10:26am on March 24, 2010, Ian Anthony Griffiths said…
Thank you Rhiannon for your lovely comment :) Left behind brought the Holy bible and scripture to life for me, love the Tsion character. A few things don't match with my understanding of the book of Revelation but overall fab series. I read them all as e-books, ate them up in reading terms lol Hugsss Ian
At 1:36pm on March 19, 2010, Kimberly Hannan said…
I loved that story and when I read it I laughed and immediately thought about Italy being a trip and not a vacation. Girls are higher maintenance on the emotional front.... But I love being a mother.... I would love a few more. But--too old---and too scared to try again. I am glad I made you smile.
At 8:31am on March 19, 2010, Kimberly Hannan said…
We walked our walk, no pun intended, for 15 and a half years. John was diagnosed a little before he was four--in 1991-- and lived to be 19 and a half. Things were so different then. You should have so much hope for something wonderful to happen concerning the disease. I look at your little boy and that is what John looked like, no kidding. I could send pictures of him when he was little and you would go hmmmm. I have found over the years that Duchenne boys have two looks, pretty much. We have met many, many families and they either look like John and your son or have a rounder face with dark hair, usually. It is funny. I guess that is the part genetics plays with certain diseases. I know your son will have a wonderful life and remember God gave him to you because he knew you would help him have a great life. He doesn't just pick anyone to give a Duchenne boy to. My best wishes are for you and the family.

A little funny aside from a post I see here about planning a trip at birth and when you find out that your destination has changed. We also have two girls. I want you to know that "Holland was a great journey with John." But Italy isn't all it is cracked up to be with the girls :) I think Holland was easier :) If you ever have questions, etc....drop a note. But know I pray everyday that no other family has our DMD outcome.
At 11:56am on March 17, 2010, Kimberly Hannan said…
I just finished reading your article on advocacy. I am crying....wonderfully written. I don't know if it is for you or because I could have written that article just about word for word as we were on our journey with our son. Keep on doing what you are doing. My prayers are with you. I wish you all well. The wonderful will far outweigh the bad. Sometimes when you are living it it may not seem so but it will. Bless you all.
At 9:51pm on March 10, 2010, Joanna Johnson said…
No, I'm not on Facebook, but my husband Paul is. I keep saying that I'm going to get an account, but have yet to get around to it. Sorry it took me a while to respond. I'm still reeling a bit after the discontinuation of the Ataluren trial. Ugh... Remember we said, just when you think God can't dump anymore crap on your head...bam, another load full. We're trying to stay positive and hope and pray that something pops up as they further analyze the data.

Great article on advocacy posted in the March newsletter by the way. Very well-written and well-expressed.

How are the behavior issues going with Riley? We have had quite a few things creep up starting about a year and a half ago. He had been on steroids for about 6 months at that time. Mentioned this to our Dr. at CHOP. He told us to wait before we start moving with anything. Issues did not subside. More issues in a new school this year. Had him evaluated and came up as at risk or clinically significant for lots of areas (ADHD, anxiety, OCD, asberger's). We are now going through Children's Hospital of Phila's behavioral health dept. to see what they recommend. It's not an easy road. One of the best things that happened was Elliott working with someone from our area Intermediate Unit this summer. She gave him a great strategy to manage his anger. It goes along with a book and he needs to practice "turtle" (a turtle in the story has some anger management probs :) To practice turtle he needs to stop, explain the problem and then say how the situation made him feel. It was not instantaneous, but over timed it worked. If you are interested, I'll get you the name of the story. If I can help in any other way, please let me know.
At 10:36pm on March 3, 2010, Joanna Johnson said…
Rhiannon- What a pleasure it was to see you again, and to get to meet your husband Ray at the conference in DC. I read your bog post from 6/08. Awesome!!! I have felt that way about 1 million times. Hope you are well, and that we see you soon and that you had safe travels back. Go Red Sox!!!
At 10:20pm on July 7, 2009, Tamara "Michael's Mulisha" said…
Sorry it took me so long to reply. We have been very busy over here int he 110 degree weather of Arizona. Im getting closer to my due date and we just got back from vacation in Wyoming. So here is the latest on Michael....We went Dr. Wong back in April. She believed Michael to be Becker. We were very excited to hear her say this. So we went ahead and agreed to do the muscle biopsy. So, we went back in May to have it done. Got the results (today) and it is confirmed he has mild/moderate BMD. I am wanting to talk to Dr. Wong to get all the details of what this all means. So I hope to know more in the next few days.
On another note...did you go to the conference? If so, fill me in. How was it? How are you doing and Riley?
At 3:48pm on June 23, 2009, Kimberly Damron said…
Hey Rhi,

I was surprised how much the conference was. That is why my husband is not going. I am taking your number with me. I am riding with Jessica Round. I hope we can get together. Talk to you soon, Kim
At 10:08pm on June 21, 2009, Kimberly Damron said…
Hey Rhiannon,

Just checking to see if you are going to the conference. I would really like to meet you in person-you don't know how much you calling me helped me. I eventually would have heard of dr. Wong, but not as soon. We saw her in April and are scheduled to see her in December. Talk to you soon, Kim
At 6:23am on June 11, 2009, Emma Jerred said…
Hi Rhiannon. Sorry not been in touch sooner.......but you are more than welcome to use Sam's photos. Been looking at your lovely pictures....what a lovely family :o) Hope things are ok with you guys.

Best wishes Emma x
 
 
 

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