Rhiannon Traigle's Comments

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At 4:13pm on August 11, 2008, Kari said…
Rhi
I just talked to Lynn a little bit ago and I changed my Hotel to Hannaford Suites: http://www.hannafordsuites.com/extended_stay_cincinnati.html
I understand this hotel is more like home with suites verses rooms and one of the favorite hotels for the families. You can call Lynn in Guest Services at Cincy Hospital and she will get you a hugh discount that way. Her number is 513-636-5009. There is no indoor pool though. There is so much more to do, who knows if we will have time to swim. I did leave another message for Lynn to see if she knew of another hotel with an indoor pool. So, I will let you know when I find out for sure.
At 2:14pm on August 11, 2008, Rebecca Saulsbury said…
Hi Rhiannon,
I keep thinking "Aren't we supposed to have more time than this?". I guess it's a constant adjustment. I know my son will do it better than I will! It's amazing how flexible kids are . . . Your son sounds like a trooper.
In health and happiness,
Rebecca
At 10:53am on August 11, 2008, Julie Garcia said…
Hi!

I sent you another e-mail this morning...sorry for the delay.

Take care,

Julie
At 10:52am on August 11, 2008, Kari said…
The book is Heaven by Randy Alcorn so it is a different book. I have not had much time to read lately with getting ready to sell our home, but I hope to be able to when we go on vacation tomorrow.
At 12:05am on August 11, 2008, Kari said…
Yes, definitely, lets look for an indoor pool. Here in Southern CA, we don't have a lot of indoor pools since are weather is so good most of the time so I did not think about that. We are going to rent a vehicle and I know we can get a corporate discount through Cincy and Lynn already gave that info to me. I will talk to Lynn and get back to you. I am excited we can hang out together.
At 7:35pm on August 8, 2008, Julie Garcia said…
Hi there!

I have to go on a small trip but will be back Friday and send you an e-mail then......thanks!

I am on the run!

Julie
At 3:21pm on August 8, 2008, Jill Castle said…
That is exciting. I don't know how you can do grief counseling, I'm always amazed at people who are that compassionate. I am considering a PHd program for clincial psychology. I'm scared of the commitment but then again I feel like if I just chip away I will be okay. Right now I work for the AZ dept of education and I help alot of folks who have children on IEP's who need help. I also do behavior coaching. I love the behavior aspect and want to be able to help more parents someday and also reach professionals. I find most teachers have never been required to have any behavior training which astounds me. The more I learn the more I fine tune the area I am going so I want to stay general for now. My personal email is Jill@connectourkids.com if you want to tlak more than blog.
At 2:53pm on August 8, 2008, Kari said…
I would love to kinda plan our trip near you to Cincy. I thought it would be nice to gather all the families that are going at the same time to perhaps stay in the same hotel and hang out together. What do you think. I heard the Children's Museum is great also.
At 2:49am on August 8, 2008, Joyce Bergeron said…
My grandson, Wil, was diagnosed with BMD in October, 2007,. changed doctors to Nationwide Children Hospital -July 2008, changed diagnosis DMD. My daughter lives in Jensen Beach, Florida, but she is originally from New Orleans area. My daughter is an only child and she has 1 son, Wil and 1 daughter, Emily. Since Wil was born we have visited every other month. He's been to New Orleans, loves the Saints and the Hornets.

Wil made eight in June. Would love to network with any family in the New Orleans area or south Louisiana. My last name is BERGERON, so I am very familiar with the Traigle name.

Joyce Bergeorn
At 7:57am on August 7, 2008, Kari said…
Wow, two Rhiannon's-I never heard the name and now I know two with these name. Neat!
At 1:01am on August 7, 2008, Julie Garcia said…
Hi!

I e-mailed you some pictures....Julie
At 3:37am on August 6, 2008, Kari said…
Rhi,
We are staying at the Kingsgate Marriot and got it through the hospital for $99 a night. We wanted to splurge a little but their usually rate is $269 so what a deal. The hotel is only a one half mile from the hospital. Would you consider staying there. Also I know American Airlines has a charity flight for two parents and once child. Have you looked on the Children's Hospital website under Traveling Families yet? Also call them they can help alot.
Kari
At 3:16am on August 6, 2008, Kari said…
Rhi, The neurologist conference is not set yet. The last I heard they are trying for Las Vegas but a date still has not been set. I asked if they wanted a parent to speak and looks like they would. So, it just if a matter of time but more than likely next year.
Kari
At 3:12am on August 6, 2008, Kari said…
Oh my gosh Rhi, I am so excited. We will be there with Dr. Wong November 11-13. But we will be flying in on Nov 8 and flying out on Nov 16. Jared's 8th Birthday is Nov 14. So we will get to meet-yea! We want to take Jared to the Zoo and aquarium also. On the weekends, we will hopefully stay with friends about 2 hours away.
Kari
At 5:06pm on August 5, 2008, Jill Keenan said…
We used to start earlier and get out earlier but the last few years they have pushed the start dates from like the first week of Aug. to the 3-4 week of Aug. We get out now like May 20-23--they took away our week long Thanksgiving break=( Your little guy going off to K--big steps, huh? I'll be thinking of you--I am glad Wyatt has another year before he has to take that step but that's just me being, well, wimpy I guess! But he is my baby and it will be the first time in 17 yrs that I haven't had any kids at home--how will I fill my time??

Just keep me posted on your trip here and we can figure out the details later. That will be fun--maybe I can even plan for you to meet some of the other families around here--there are quite a few. Anyway.....

Did you ever get the long-awaited results from the DNA test??? I hope for that drs. sake you did:) And I hope it is a premature stop codon that PTC 124 can treat!

Talk to you later!
At 12:57am on August 5, 2008, Jill Keenan said…
Hey girl! Back to our old ways I see--ie.the time;) Wow your kids are starting school already?? Or are you just supermom and getting it done early? We start Aug. 25th thank goodness. This summer has gone by way too quickly. I'm not ready for the rigid schedule that the school year brings!
I hear you on the conference. It was great to meet everyone--that was the fun part, right?=) Michelle said she had been in a funk lately, so I guess we are not the only ones!
I would love, love, love to have you come visit and meet your family! That would be awesome. I live on the NW side of Houston. Do you know what part of the city your friends live in? We could always meet somewhere for lunch/dinner if we are not so close to your friends. Keep me posted.
TTFN, Jill
At 12:18am on August 5, 2008, Wendy St.Geme said…
I will definately post something soon - just tryin to figure it all out. I just rea "i won't appologize" and phew - that was an emotional read! Thank you for expressing/representing all our raw emotions - that was very powerful !!!
At 1:44pm on August 3, 2008, Rebecca Saulsbury said…
Hi Rhiannon, I think we met at the conference. Anyway, thanks for such thoughtful and kind response to my, shall we say opinionated, blog posting. I read your blog on apologizing and I see that creeping in again when people ask about Milo and his health. Well, maybe not apologizing anymore, but justifying because, though it's increasingly obvious to our family that the disease is on the march, it seems other don't see it. Oh the looks we get a his elementary school, as the only ones to get a decent parking spot!
I work every day to be the thoughtful, compassionate, educating
person in response to those looks but it's very hard work. You seem to be doing a very good job at it.
Hope to see you again,
Rebecca
At 10:40am on August 2, 2008, Julie Garcia said…
Hello,

I am so sorry I did not meet you at the conference. I would love to some day meet you in person.

You have a beautiful family.

All the best,

Julie
At 6:58pm on July 31, 2008, James Poysky said…
Hi Rhiannon,

It was great to meet you too! I appreciate your passion and sense of humor, and together we will make a difference. I'll be in touch...

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