Good news comes in waves...

Oh, the amount I have to write will take all my spare time, and then some. But I just got my business tax returns back and learned I actually made money in 2007 so I know I am not spending enough time on the Internet! Might have to cut out more work? Making money is a principle I gave up 5 years ago. I have worked harder and longer hours (on the jobs I fit in around Makenna's schedule) the last 5 years than previously but still never seemed to break out of the red? But things do get better. In 2004 Makenna and I traveled a little over 8000 miles for doctor stuff and spent 42 nights away from home. This year, 2008, we only traveled 4,250 miles and spent 8 nights away from home. And Sheri did a couple of those nights and many of those miles! Work went much better in 2008. But to stop any speculation, I don't consider $4,120.00 profit much to celebrate about. When my brother and I started this thing I call a business, ten years ago, our long term goal made us out to be wealthy middle-aged men. Oh, the dreams of the ignorant.

More good news: I can share more of my story about why I am blogging. For about 6 months I have been in contact with a PS family in The Netherlands. I didn't have permission to disclose that info before. They are doing great as a family! Very positive about their son with PS. And he is doing good in his development. I went on a search like a "mad man" after Makenna's diagnosis. This family was the only one I found that would entertain me contacting them. It has been an incredible boost to me and Sheri emailing with them and sharing stories and photos, and encouraging each other! I realize I am a little negative and often depressing so I know they encouraged Me more than I did THEM. But they have kept my interest in parent support alive because they are so supportive!

Still More good news: I am also in contact with a family in the UK with a son with PS. I can share more of his info so will drop names and stuff. MUUWIRED from Makingcontact.org finally emailed me. He has been very supportive too. His family sounds like it is doing well. He has two sons, his youngest was diagnosed with PS. He got my award for posting the first comment to this blog! (And Matt, I am sure you will be getting that award in the mail just as soon as I learn how to post an international package....so don't hold your breath!) If you want to contact him go to Makingcontact.org and send him a note!

I have also heard from Sanemum but don't have enough info or permission to share at this time. I think I goofed that line of communication up. I know Matt has been in contact with her and I know he is an excellent spokesman for Pierpont Syndrome. And I believe Sanemum has a lot of knowledge about PS in the UK that I want her to share with our group.

I have also heard from a mum in the UK who's daughter is not yet diagnosed with PS. But her doctors are leaning toward that diagnosis. I know there is more to it than: "WOW, look at that kid!", from a genetic doctors stand point there has to be more. But when Sheri and I read, and looked at the photos in the two AJGM documents last July we were awed by the connection we felt! I have seen photos of Adamadamum's daughter and read a detailed list of medical issues/symptoms. I am pretty sure Adamadamum and her daughter are "in the club", but my college degree only states: "I don't paint"! It doesn't say: "I can do clinical diagnosis on your child".

I don't even know if Makenna is in "the club"? I believe we are. I do know every parent I have talked/emailed has different issues, some sever, with their child that they wonder if it is a PS issue or not? I also know most PS kids development is better than Makenna's. I realize my "big fuzzy picture" post wasn't everyones issues. I am so happy for the kids that eat, walk, talk or are learning signing! I realize those skills came with a LOT of work! I am NOT trying to start a pity party for me (or anyone else). I hope everyone keeps sharing the great news of the milestones your child makes with each other.

Thanks for reading this. Clyde