Little Mak': One out of Millions

Hi Pierpont Families and guests!
I only have two votes on posting videos. Kristy said she was able to watch the You Tube videos and liked them. Sheri (my wife) said she wasn't able to hear what the kid said on the "long video"? I realize it is poor quality, But (almost) just like that kids dad filmed it from the audience with a handheld camera. "Almost" because I know they edited out a couple names and derogatory words. I would apologize for posting such a long, poor quality video...if I felt bad about doing it. That was the best speech I have ever heard! But if you couldn't hear it I would like to know.

New stuff: Sally! I was supposed to thank you, days ago for visiting Puk's site and leaving a message in the guest book!! Tonight when I read what you wrote there I wanted to post Danielle's thank you here. I appreciate your visits to my site, too. Is there any chance you also speak Dutch? Prof. Hennekam is London. I still thought Prof. Brunner was in the Netherlands? Please share! (I have reason to think Prof. Brunner is in England more than The Netherland's.)

I do know all of our DNA samples made it to Prof. dr. Brunner's lab. It actually got there before all the past medical records I sent. And I still need to request MMI to send all of 'Kenna's genetic records from the University. I have had time or could make time and I have had the "written request for records" form on my desk for weeks.... But I really sometimes go into "lock-up mode". The test Prof. Brunner is conducting has nothing to do with other tests that were performed in the past. Each one of those times we got our hope up. All were negative. And I suppose a big part of me just wants to pretend like they didn't happen? I know they all mattered, and at each moment in time they were all that mattered to me. But I suspect Prof. Brunner already knows what each test was and what it said and didn't say, and can proceed without those reports (for now).

Or maybe a more positive way to spin this for families is: Don't think you aren't already known around the globe! Prof. Brunner knows one of our geneticist's from Omaha, NE. Dr. Ann Olney. So I suspect they are comfortable enough to converse about Makenna, and I hope they do! At length!! I couldn't buy that kind of exposure. And I really don't think Dr. Schaefer would have been willing to be involved without agreeing to the research and perhaps talking with Prof. Brunner in person? I speculate on this because I have "name dropped" enough to realize, that they wouldn't let some dullard, and only a parent at that, in 'out state Nebraska' to drag them and their good names into a medical quagmire. The research must be sound. But a medical quagmire we are in, as parents. That is my goal, parent support. But I want out of this medical quag.

We may all feel like we are on our own tiny island and NO one else knows the GPS coordinates for that island . That is not true! I believe again and more strongly than ever, as parents, we deserve to know what is going on in the medical community! Who the players are, who has taken the lead? OK, now I sound too radical so will close. Oh wait, that is what this blog is about. My thoughts. So what I wrote is NOT too radical for me. Clyde