HI Paul, I know you and my husband have talked but I was just wondering how your wife is doing with both boys. You guys live so close to us we should try and get together sometime soon. Hope all is well. By the way your kids are adorable!!!
I hate being so far away and I guess that joining some of these discussion sites (not that I participate much, just lurk) in some strange way makes me feel more connected. There is sooo much to learn about, process and discover.
I have also discoved that I can read about the same subject in several sites - understand one and be confused by another. So sometimes it takes me several sites to figure it all out!
I cannot believe that since I "suggested" to you last July that you blog more often that you would be so good at it! Although we talk on the phone there are not often times when we can really talke with the boys in the backround, etc. and I have learned so much about what is going on with them, you and Jo, and just your feelings from those blogs. I hope that it has also be somewhat of a theraputic thing for you to get some of those feelings out.
Love you - Mom
I LOVE the new pictures! The boys are so cute!!!
How are you all holding up? We are keeping the booze to a moderate level ;~)
Let me know how Elliott is doing as the weeks go on. I can't believe Jack is at 6 months already!!!
I see that your aunt joined..., I thought Henry and Elliot were her sons, but looks like they are your gorgeous boys!!! Sorry for the mix up, just wanted her to have a warm welcome. My sister has a group for Aunts...let your aunt know.
Hi Paul and Joanna,
We just learned this evening through a call from CHOP that our younger son, Ryan, has DMD also. It feels important to me to be able to talk with you, as I think it is even more rare to walk in these particular shoes. John, my husband is really thrown, angry, overwhelmed. I have a different style but I'm sure the same basic emotions. I'm hoping in some time we might be able to meet you. I'd like to call you after I have some time to try to digest this new reality. Thank you for your number, and thank you for coming into our lives today.
Thanks for reaching out......I am amazed to hear you are so close. Our boys are 5 and 11/2. We learned 2 weeks ago that Jake has DMD. We are going through CHOP's neuromuscular program. We don't have a result back on Ryan, our youngest yet. I would absolutely like to stay in touch and meet your family sometime. We are working on wrapping our brains around this like everyone else here - but I believe that to know others with the same challenges is so important. Its a comfort to know you all are as close as Downingtown. Wishing you a good day.
Thanks so much for getting in touch. I would love to speak to you or your wife at some point soon. Are you going to the conference? We will be seeing Dr. Tennekoon (whose name I can't keep straight), on 8/8. Jordan normally goes to the pediatrician in Wilmington at Brandywine Pediatrics. I haven't spoken to his pediatrician since February, we've just been dealing with the specialists since then.
I am so sorry about your boys. We were and are still hoping to have more children, but I don't know if I am a carrier yet. I expect to have those results prior to the 8/8 visit. We have no family history.
Have you come across any other families in this area?
I hope to hear from you again soon. I'm new to this site, but I'll add you to my friends (not sure what that means).