Actually, we bought tickets to the Atlanta vs. Red Sox game for Friday night, but later decided that we couldn't afford to pay the registration for me and my hubby and the hotel stay for the entire conference and I have to take alot of time off of work because Riley needs surgery in the next month....sooo, we are driving up to Atlanta Thursday evening and will be there all day Friday and leave Sat since we already had the game tickets. I know it's crazy, but I hated to not use the tickets and my hubby is a HUGE Red Sox fan. We're going up with my sister and best friend; we'll all be staying Friday night at the Regency Downtown. I would love to get together with you all sometime Friday if we can!! I am really hurting that we are not attending the conference. I feel like I am missing out big time! I went to Philly last year and absolutely loved it. I certainly thought I would be there this year (which is why we bought game tickets). I am definately going to save up so we can go next year, I can't imagine missing out again...i did enough crying about it to drive my family crazy. Also, I have been wanting to talk, Riley needs surgery this summer to have his tonsels out and tubes in his ears....I am a nervous reck!! I am so worried about the anesthesia that I have been putting off scheduling it. Well, I hope ya'll have a great time at conference! Please, please fill me in on everything and I hope I get to see ya'll for the short time I'll be there! Call me if you can, 985-713-1634.
good morning, my email is email@example.com my cell is 504-202-2261. i will give you a call today. I will be running errands all day so that will make it easier. can't wait til Wed, weather looks like it is going to be cooler in atlanta than hear (low 90's instead of upper 90's.) Talk to you later.
Hey Kim, Yes, the MDA will pay for the visit with Dr. Wong. i don't know how much they pay (meaning just Dr. Wong, the cardio, the xrays, whatever), but I know that at least the Dr. Wong visit is covered. Also, I know many people get their tests run at home and just bring the results to Dr. Wong, so that is an option as well to keep costs down.
We had a good Christmas. Seph got a 4 wheeler to ride in our yard (we live on 8 acres) and today got his scooter. He loves it. The scooter will be used for now in airports, malls, zoo's really anywhere with lots of walking and the 4 wheeler for play. he is getting too big for the stroller!
Hey Kim! Yes, we are back! We went last week..the 10th through the 14th. I'll have to call you to fill you in. It was a great trip and certainly more than what we got here!!!!!!! I have been crazy trying to get back to 'normal' if there is such a thing! LOL! We have a wedding Sat., but I can call you or you call me on Sunday. I am super sad that I missed meeting you all for the game! So, we definately need to get together!
Actually you can tailgate anywhere but The parking lots have the RV's in them so we will have to set up somewhere else. I think Lori is trying to get by the tiger but it is usually where people are just walking thru. I think there will be too much traffic there. I guess we will see. We aren't going to the game either, unless some miracle happens and we get tickets. They are hard to come by even if it is not a big game, like Georgia. We can't wait to meet everyone either. Talk to you soon. I have your 225 number but what is your cell? I remember it started with another area code, but I did not save it.
So I guess ya'll are going to tailgate too, after reading Lori's comments. I could not remember if we discussed that the other day. Are you bringing the kids? I think we will bring Wyatt. We just don't know where we are going to watch the game. I heard tickets are around $300. Keep in touch.
I don't know if any of us have tickets, we are just going to do it to support the Coach for a Cure for MD campaign. It will be fun! There will be near 50 of us in the same t-shirt and raising awareness and $$$. Details are not out as it is for 10/25 and the game time will depend on ESPN...so we will see. The tailgate will be on LSU campus, near the stadium...that is yet to be determined as well. Email me and let me know if you all will be able to attend and how many t-shirts you will need (kids too...they will have a BLAST!)
Beau was diagnosed after a couple of months of physical therapy through Early Intervention. (I had him in the early intervention program because he had been walking since he was 16 months, but never learned to run.) He wasn't quite progressing in pt like we had hoped, so we took him to a neurologist. The neurologist thought it was what we thought, just low muscle tone. He assured us it was not MD. We still did a blood test just since we were there and needles don't seem to bother Beau. His CPK came back at 20,000. The doctor was shocked. Needless to say, so were we. The genetic test came back about 2 months later. He has deletion in exon 54. I am just learning this...what is a duplication?
Hey Kimberly!! I love the picture of the kids!!! They are sooo cute!!! We did ok for the storm...just some minor damage to the house. How are ya'll? Did you hear back from Dr. Wong's nurse? The first time I called it took a while to get a response. I just went ahead and filled out the intake form on the computer and emailed it in. I hear that they are super busy now with patients. We definately need to re-schedule our get together! I am anxious to meet with everyone and just sit and talk! We did FINALLY get those results. I was of course hoping for a non sense mutation, but I knew the probability of that. I am ok with our results though..he has a deletion of exon 45. I am glad it is only one and that it is in the 'hot spot' so hopefully exon skipping will get around to 45 soon enough!
Oh and to change yourself from a grey shadow guy you need to go under my settings (on the top right of the page)...there should be a spot that says profile picture that you can click on to add a picture. I figured how to put a profile before I figured how to add other picutes, so you are ahead of me!
It looks like our boys are the same age. Your children are precious!
I saw that you are making taking him up to see Dr. Wong or maybe you have already been. We are going in January.
Nervous, but excited!
Okay so I think all you have to do is go to "your page" and on the left hand side it says change photo. Click on that and it brings you to the my settings page/details. There is a place that says profile photo. Or look on the right hand side of the page and there is a spot that says settings underneath the Hello Kimberly. I hope this helps. It was nice talking to you. we will definately have to get together soon. Are you going to the LSU game for Coach for the Cure? Talk to you soon.
Hi Kim. Rhiannon told me that she spoke with you. Just wanted to say Hi. And welcome you to this new family. Hopefully all of us can get together and meet soon. I am so glad that we are finding more of the LA families. Hope to hear more of your story. Keep in touch.