Greetings!

Things have been slow on this site. Special thanks to Danielle for pointing that out. I think I will start posting photos of things just related to Makenna and her care to make a post. And it may serve a great service to people who stumble on this site? For example: Makenna hasn't been feeling good, so we have been hanging out together for a few days. And at one of her feedings when I decompressed her I got a "classic syringe half full of yellow stuff"! (not just a little but a lot) And I thought, "I should take a picture of that because it has been months since I have seen that!" And Sheri and I had to wait a long time to see our GI doctor to question how normal that was (years ago when we saw it all the time). We really began to panic. So I think a photo of that here would be a great community service. And when the Internet begins to incorporate "smell" you will get the full effect. ...I guess a bright shade of yellow, thin, smelly fluid is normal (they said then). I am saying it is "normal" when the kid isn't feeling good. I wish I could narrow that down some more but I can't.
And this blog has always been a place to announce any new information about the http://www.pierpontsyndrome.com/ website, which doesn't give me a lot to write about either. But I did receive a letter from the family in Northern Ireland!!! (That would be "boy two" in the first AJGM article. Or Dominic!) I don't know how much I can share about this boy either? We haven't gotten to the point where I can give names, or many details... but his mum said she would send some pictures to include on the website. This would be through a friend/service provider who does use the Internet. (I really want to type her name here and thank her! I won't till they say I can, but thanks "A"!) I will give that a while to happen and if it doesn't I will scan some photo copies and see how that looks on the web, because I do have permission to put some photos up. I will summarize her letter to me as (this is the part I don't know if I have permission to say so I will be precise and mostly vague), "Dominic is 14 years, 9 months old now. His vocabulary is one word, but is very vocal! He does eat orally, with some modifications. He has scoliosis which will require an operation, and is on a waiting list." My thoughts are: He looks like a happy, bright boy who anyone would enjoy being around, and they do!! And a glimpse 9 years into the future was priceless for ME!