Recent content by briansmom

Obviously, Brian still does quite a bit, but he doesn't listen to me very much either. I think you have to be careful to not be too overprotective - which is much easier said than done. I think if you would have been comfortable with him on the monkey bars before the coumadin, then he should...

Way to go Cris!! So happy to hear about your progress.

I've been thinking about you guys. Hope you had a happy Thanksgiving. Prayers and happy thought coming your way!

That is the same LVAD that Brian had. Brian was the first person in the country to have an LVAD removed without getting a heart transplant. They were already doing it in Europe and it is now being done more often in the US. Brian definitely had more energy and strength with the VAD, but the...

As many of you know, Brian and I went to CC a couple of weeks ago. Yesterday, we finally got a plan. CC still doesn't have a diagnosis for us but they talked to Brian's doctors from home and came up with a plan based on everyone's best guesstimate. Unfortunately, they have decided on steroids...

I googled sinus of valsalva and read a paper that said that there is rarely a problem before puberty. Also, as to genetic testing there are 3 tests available. There is a Marfan Fibrillin 1 test (about $1500), TGFBRI and II test (about $800) and various Ehlers Danlos tests COL1A, etc (about...

I am very interested in this thread. It looks like they are going to put Brian on prednisone also. Halley, please let me know your experiences with the steroids, I am really scared about it.

I 2nd and third what Andrew's mom and Lyn said. It is way too soon to worry (way easier said than done).

:(:(:(:( I just want our boys to get a break to live "normal" lives for a while. How long was he out of commission the last time he went through this? Good thing chicks dig scars - cause our boys have way more than their fair share. My thoughts and prayers are with both of you. Call me if...

the odds of both of them having Marfan in the absence of family history would be really long. On the other hand, they are probably too young to show the physical characteristics yet. The most dangerous thing with Marfan is an aortic dissection so as long as your boys are getting echos on a...

"connective tissue disease" is a very broad spectrum. Do you have any Marfan in your family? Sinus of valsalva aneurysms are often associated with Marfan. I also read that it is extremely uncommon for this aneurysm to cause a problem before puberty. So, the good news is that you are on top...

http://www.medicalnewstoday.com/articles/170920.php An innovative method is being used to repair the breastbone after it is intentionally broken to provide access to the heart during open-heart surgery. The technique uses a state-of-the-art adhesive that rapidly bonds to bone and accelerates...

Awesome, I hope Idrees is enjoying his better health!

quote from Lyn However IF you are asking, what we found that worked well with nurses advocating for our child. The most important thing to me is nurses really listening to parents and understand we do know our child and if we say something is wrong, this isn't normal, believe us and don't make...

I'm so sorry to here of this. My thoughts and prayers are with you for strength and peace during this difficult time. We will miss her here, even in this short amount of time she added a lot to the forum.