KTS

Brian and I have learned a little bit more about Klippel-Trenaunay Syndrome.  Dr. Haggstrom told us not to go crazy on the Internet and I didn't.  She gave us a website that would give us accurate information.  A lot of what was said on the website is what they told us in the room, but it was nice to be able to read it.  Sometimes when I am hearing a lot of important information, I don't always pay attention to or remember every detail.  Here are a few things we found out and a few of my thoughts:

• Only 1 out of 100,000 people have this syndrome.  Of the people who have it, only 1/3 have the symptoms that Gavin does.  We always knew he was special!
• There is no cure (which we knew), but there may be treatment options.  We don't even know all of the options until we find out what we are dealing with.  Hopefully, the ultrasound and surgery will tell us more.
• After processing everything last night, I realized that the doctor who diagnosed Gavin, wasn't at the first Vascular Lesion Clinic we went to because he had a death in the family.  Had he been there over a year ago, we probably would have had answers sooner.  Nothing we can do about it now...
• I'm terrified for him to have surgery again.  I know he needs it, but I don't want to go through what we did after the MRI, especially so far from home.  The thought of him having another MRI almost sends me into a panic.  I don't want to be the crazy mom, but they may need to sedate me:)
• Last night, I had a really hard time processing this.  For two and a half years, I have been searching for an answer or label.  I finally got it yesterday.  Part of that is a huge relief.  Now that we know what we are dealing with, we know what to do next.  However, it makes it more real.  I've been dealing with all of this and taking him to all of the appointments and getting him all of the help he needs....but giving it a name makes it more real.  For some reason, I am having a really hard time with the fact that it is a syndrome.  I work with lots of kids with "syndromes" and it doesn't make me love them any less, but I feel like it can have a negative connotation.  Like people look at them differently.  I may be crazy, but this is how I feel.  I want the absolute best for my son and I will do anything for him.  I almost felt the mama bear protectiveness come out.  
• Dealing with all of this is harder some days than others.  The comment that I hear the most, and that drives me the craziest is, "He looks fine to me!"  I know in my heart, people don't know what to say and they think that it is a positive thing.  I feel like they think I am a crazy person taking him to all of his doctors and therapists when he looks "fine". Some people have even gone as far as to tell me he was fine and to stop taking him to the doctor or to a different one.  Thankfully, I have stuck to my gut and followed through with everything because who knows where Gavin would be if I hadn't!
• Gavin's Current Team:
• Dr. Voyles (Primary Care)
• Dr. Haggstrom (Pediatric Dermatology - Riley)
• Dr. Loder (Pediatric Ortho - Riley)
• Dr. Wahle (ENT - Evansville)
• Dr. Matt (ENT - Riley)
• Angie Jarboe (First Steps Coordinator)
• Melissa Arseneaux (Physical Therapist)
• Tom Whitehurst (Orthotist)