Ok, I just LOVE the rib picture!!! A man after my own heart!!! It's only good if you can get sauce all over your face!!! :)
You have such a beautiful family!! I am lovin the new pics.. I am not going to be able to go to the conference this year, we have a trip to California to see my folks. So, it was a stuggle...parents vs conference. Anyway, guess who won! BUT, I should have some cool new pics when I get back!! Have a great time at the conference, learn all you can and share with us that didn't get to go!!
Hey fellow night owl! :) I'm trying to figure this whole page thing out! It's taking me all night and morning!! My kids tell me it's so easy. Yeah right, maybe for their generation! :) LOL!
Anyway, so glad you caught me.
Talk to ya later :)
sorry to hear about your experience in Disney. We have been there 3 years in a row ( FLorida) and I have to admit that he was treated with dignity. We were given a special pass that act as a fast pass and could bring our stroller with a handicap sticker on it right up to the front of every ride that honor fast passes. Because of this, we were able to ride so many more rides and my son had the energy to endure walking/riding thru the parks longer than me and my husband could.
Hey there again! Thanks for your reply! I'm kinda funny, I get all excited like it's Christmas when someone sends me a comment...
I know all about CASA when I worked in Juvenille Justice in Arkansas a few years ago. I didn't actually do CASA, but had a job through a local mental health agency working with youth going to court for a pettition that was filed through school, parents, DCS, or other family for problems such as drugs, truancy ect. So, many times, my DCS kids had a CASA worker and I would work with them. I actually tried to get on with CASA when we moved to TN, but the position had been filled. That's ok, I have a AWESOME job now working with the state. Basically I get to do developemental assesments on children birth to age 3 and if they show enough of a delay, then I make sure they are hooked up with what they need so that when they turn 3 they can get early intervention with the school system or other programs. I have yet to come accross a child with DMD. But I am on the look out because I don't want other parents to go through what we went through....many services but no diagnosis til age 8.
Anyway, I only have a BSW, no master's. If I could go back to school now, it would be for OT I think. I have done Social Work for so long, and the job I have now is great because it is a little bit different than working with family problems ect, but I just really want a change.
I read your post about Disney World and saying sorry. I think we are a lot a like! I felt exactly like you, I always try to not step on anyone's toes, say sorry when really it shouldn't be a " sorry " from me... ect. But you and I are in a field that we are always wanting to help, and try our best to keep the peace. I find this getting harder as when it affects my son more, I become more outspoken. I won't have it, I just won't . He has to deal with soo much, don't anyone step on him anymore! I just can't imagine day in and day out of how these boys must feel. Sometimes when I sit at the pool all day and get " sun whooped" and can barely move, I think this is how he must feel every day, YIKES!
Well girl, I appreciate all you do for families out there and your quest to do more for our boys! I am glad I found a new friend!
Thanks for your post! I think I am going to have to share " cutie patutie" because after checking your site and many many many others, it's only fair everyone gets that title!!! Of course I have the HUGEST heart for all kids, truly God's gift to us all!!! You have a beautiful family!!!
Good morning! You are right! Nashville is not small, but it certainly is a small world. I'm sure there is someone we both know. I was looking through all your pictures. You have a beautiful family. And you are stunning--really gorgeous! Thanks for the welcome.
How are you and your family. Sorry I haven't been in touch lately but things get so crazy in the spring. Thank goodness school is almost out. Are you going to the conference in July. We are trying to go it is hard to find someone to stay with my kids.
Talk to you soon
Hey Riannon, I saw that you live in Labdieville. Where exactly is that? I live in Hahnville, which is about 20 minutes from New Orleans, in St. Charles parish. Maybe we can get together soon, if it not to far. I noticed that you "met" Lori Ware. She is a great friend to have. She is a great resource. I saw that he was just diagnosed recently. Where are ya'll going for care?
Life is crazy and a trip down south isn't going to happen right now! Sorry!!1 I wish it could. Thanks for the update on John. Do you have a phone number where my husband or his sister Allison could reach him or Sonya?? Pleaes keep me updated
You bring up a good point. There isn't a clear place to start a topic discussion on conference For now, you should start the discussion under Research. I have added this comment to our list of fixes :)
Thanks! looking forward to meeting you in July!
Hi there! Yes you can. You first want to go into the section "My Friends" then at the bottom you will see a link to "send message to my friends" This will allow you to send a message to everyone on your list!
I am so glad you are going to conference. 1st conference is hard, but very much worth it!!! I am still thinking about heading down south....How does June 7 look to you for a get together in Baton Rouge?
Your page is great!! I am completely challenged when in come to computers...it will be a wonder if I ever get any pictures up and any of these sites. My twin sons, Nolan and Jack, were diagnosed 12/06 when they were 5. I have another son, Caleb, who will be 9 in July who is unaffected. Thank God for these message boards; it's a great way to meet others in the same boat.
I am a mom of Will, age 51/2 who was diagnosed at age 3. We adopted him from birth. We had no idea he had DMD. We feel so lucky to have him. He is the light of our world. I see that your son was diagnosed recently 1-08. I will keep you and your family in our thoughts and prayers. Sincerely, Char Burke
Good to meet you Rhiannon (online, that is!) This site is awesome. What a beautiful family you have! I noticed Riley was diagnosed fairly recently diagnosed...imagine you're going through quite a few emotions. Kudos to you for getting involed with PPMD...hope you find it as helpful as I have so far!