Okay, call me crazy, but for the life of me I can't seem to find where all the groups are. When they changed the website, I completely lost the groups. Can you help me? I know you'll know how to get there.
Thank you for the email last night and your support, really what would I do without you :-)!!
Hey! Hope you guys have a fun and safe trip. Thanks for your words of encouragement regarding steroids -- I think we're doing the right thing by starting him now, but it is a scary step. Definately makes things feel "real". Just read a blog from October. So Wyatt actaully jumps and runs? That's awesome! Max can race walk like a champ, but just can't run or jump at all. I'm hoping steroids change that. I'd love to chat with you anytime too! Take care!
Hi Melissa!! Carter is adorable (so is his big brother Wyatt!!). His birthday is right in the same bracket as my boys! Ethan is the 11th and Joseph is the 24th. (I am also on the 9th). We have Ethan in a research study for DMD in Minneapolis. It's amazing the difference in the clinic there from the one we go to (Minneapolis is ALOT better than Madison). Glad to see things are going well. It was good to hear from you. I don't really do much on here anymore either. Occasionally I pop in if I get an e-mail that someone sent me a message, etc. If you are on FB you will have better luck chatting with me there. Talk to you later!!
Hey, Melissa! I saw that y'all will be headed to Cinci soon. Do you think you will start steroids? We saw her a couple of weeks ago and decided to start Max in about a month. He is in the 75th percentile for height, so she felt that the growth issue won't affect him for awhile (he's the second tallest kid in his class -- he goes to a Montessori school three days a week). I'm super nervous about starting him so young, but I'd love it if he gained some strength and, consequently hopefull won't fall down so often. I'm most concerned about weight gain -- I've been hearing a lot about how hungry people on steroids get. Anway, just wanted to chat with another mom of a little guy! Hope you and your crew are doing well!
hi melissa how are you i just love to look at wyatt picture, oh just so cute i to am taking the time to smell the rose even when i have a sinus inferction. kimmy ps did you have the baby yet love to see picture.
Hi Melissa - Thank you for the response. I bet you are excited about the baby - you all have alot of children and I think that's great. At times, I wish we had planned and gotten Will a sibling. But, it just didn't work out that way and we are older parents. I thought Dr. Wong had diagnosed Wyatt with DMD but was surprised that he was jumping. I don't think that the DMD really begins to rear its' ugly head until they begin to advance on gross motor skills.
Thank you so much for offering to be an ear. There are days where I get down and think how can I ever manage this? Just to talk to someone who really understands is a gift itself. Tell me again what Wyatt's mutation is. Is he a deletion about 50? If so, then the exon skipping is a potential. Will has a duplication 54-57 so it's not exon skipping....it's the myostantin inhibitor and that's just in the clinical trial stages in Canada - Phase I. Acceleron is supposed to start clinical trials in US in 6-2011. I try and focus on that. It's hard to stay positive at times. Will is now 8 yrs and I fear him getting older if you know what I mean. I hope you and your family have a great holiday and God bless you all. Best - Char
Hi Melissa - Thanks for the email. All is ok! I was just reading some comments about Wyatt running, jumping, etc. Is Dr. Wong sure that he has DMD? Most DMD-ers can't jump. Just wondering. Will was on GH therapy - growth hormone but that caused some side effects so we are off of it for now. When is your baby due? Do you know whether it's a boy or girl? Hope you and your family have a great holiday! Char
Oh the dreaded sickness! I had it badly this time (I had nothing with Seth). Suffice to say, it does pass eventually.
Wow, I amazed that you had three embryos put back in. Maybe you'll have triplets?! Now that WOULD be exciting!
Here in the Uk they generally only allow one. It makes me realise how lucky I am for it to have worked first time.
Yes, Seth talks all the time now. He says some words sometimes that I'm amazed he even knows. He's like a sponge - he hears something once and then it surfaces a few days later when I'be forgotten I've even said it. He's starting to put short sentences together like "ball gone now" too. He certainly seems a bright cookie so far.
Keep in touch and let me know how you get on with the pregnancy. I think you're having a girl for some reason.....
Congrats on your pregnancy (I saw your message to my post about stem cell storage). How far along are you? I'm currently 16 weeks and the baby is due on Christmas Day! Do you know the baby's sex? We don't - but I have a feeling it's another boy. We had CVS to totally rule out DMD and also the commoner trisomies. All came back fine. My little boy, Seth, is currently 19 months old and doing great. I just pray everyday that the treatments being developed now will help him and every child with DMD in the future. Hope you're feeling well too.