Greyson has been doing GREAT and we are excited that no issues have popped up with his Lymphatic Malformation since last October. His chest/shoulder look AMAZING and no where close to what it looked like when he was born. Many people have asked why we are doing more procedures since he looks so good so I thought I would explain it here if more of you are wondering the same thing.
First off, the tissue in his chest (and there is still more even though we can't see it) that is malformed is very unpredictable and no two LM act alike. It can sit and do nothing or grow at any time "unprovoked" and there is a good chance it will get bigger if he gets sick (like an upper respiratory infection) which wouldn't be good because the tissue in there could get infected. The LM doesn't cause him to have a weakened immune system but if he were to get sick it can cause his LM to get angry and react. :)
The doctors we are working with believe that the more of the tissue you treat, and/or get out, the less of the possibility of it filling up or growing...especially if it is connected. So our goal is to treat/get out what we can in hopes that it deters future flare ups or growth. Dr. Spaeth thinks that these two round of Sclero and surgery this fall may contain it enough so that Greyson won't have to continue having MRI's, sclero, etc. possibly until he hits puberty. Some LM are affected by hormonal changes. And getting it done this early means he probably won't remember it :)
I have said it before and I will say it again...Greyson is doing great and is having no problems with his LM and we are very grateful for that. We have learned a lot throughout this journey and continue to learn more each day. We hope that being proactive now will make the future a more enjoyable time when we can spend our future vacation time on actual vacations and not traveling to hospitals :)
Thanks again to everyone for all of the support and love. I wish you all could spend some time with Greyson these days. He is such a sweet, loving, energetic, happy, funny little guy and he keeps us hopping minute to minute.
Brooke (Michael and Greyson)
