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Well, rare disease day came and went, we didn't celebrate.

Makenna is doing awesome! Healthy once again. We had a big pow-wow at school last week to plan Makenna's inclusion in Kindergarten next year. The school system is planning good things. I guess I didn't really know what the meeting was to be, as it turned out they wanted our input and it all seemed so serious. I went to college with less planning and fewer people knowing I was coming, me included until the last week or so, honest. It is very surreal. Every step is good, but every step is too difficult to describe. I have a photo of my brother and me heading to kindergarten on our first day: we had our mats under one arm , a box of crayons in the other hand and our hair slicked down. (I haven't looked at the photo for a while but it was either a box of 8 or a box of 16, I suppose the "snooty kids" had 32? I don't know if they had 64 or 128 colors then?) Things have really changed, for the population in general, and for parents of special needs kids especially. I am trying to adapt, Makenna is worth it.

Celebrate Rare Disease Day!

This year, Rare Disease Day is February 28th in most countries. There is one place in the UK who will host a gathering Tomorrow, Feb 25th and a couple on March 3rd. I just learned about it and wanted to put a link up: http://www.rarediseaseday.org/ I couldn't find any place in the USA where there is a gathering for families and children as is happening in other countries. I suppose there are? But the UK has three sites planned, as I said earlier, and Ireland has one event planned on the 28th in Dublin. Again, just like us we don't live all that close to where the cool stuff happens.
Any way, The UK's You Tube video was better than the USA video.
But visit the site. I also wondered what "disease" meant? It is interchangeable with "Disorder" for our purposes on Rare Disease Day!!

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!

People in Pierpont

We haven't taken any photos of Makenna since the Christmas photos. I could write about her cold(s), her 24 hr flu that took 4 days to recover from (feedings can go horrible so fast!) or her recent medical/medical equipment information. I know for some it would be fascinating and I know if a new Pierpont parent stumbled on the site that kind of information might be enough to encourage them to post a reply or follow up with me privately? But to our family and a few others I just think it is the same all over and not worth wasting my time writing about. And I don't think a post without a photo is a good post. I visit many sites, as time allows, and if there isn't photos I don't spend a lot of time there...unless the author is a great writer with a lot to say. I could say a lot but still wouldn't be a great writer so I leave that to others! That only leaves me the option of discussing/commenting on a photo or two.
Here is a photo I have had for months. This is a group photo from the UK Genetics conference in 2007 or maybe spring 2008. I am going from memory on this fact: I don't recall where I found the photo but think it was taken at the Inaugural Joint Meeting: UK/Dutch Clinical Genetics Societies? I expect some of you to see YOUR child's geneticist in this photo. And I hope to be able to fill in some others names. I think I know who three people in the photo are but have 4 faces to three names, or I could be wrong and only have three names and all wrong faces? No, I know I have ONE right. This photo came from a search so I would be able to write to Isabel, about her geneticist. I never sent that letter. But I have been able to find much information about her geneticist after searching the web. She is very committed to her work, and very respected, and upper management in her profession...and still in this photo! I will add here that a search of one person gave me a better understanding of how interconnected the medical community is "over the pond" and how interconnected our family's could be.

What I think of this photo is, "there is a group of wonderful people with great minds!" I realize there is a lot more to their day/week/month than Pierpont syndrome. But we aren't doing much to push them for information about Pierpont Syndrome, or any similar set of symptoms. And Pierpont Syndrome has been mentioned at least 4 times in their meeting's minutes in the last 5 years so they know a lot more than they are sharing. I would like to hear from people who recognice the faces in this photo!!

Merry Christmas!

Late but a Christmas post non-the-less!

This year Makenna was a "ham" at the photo shoot. So I made a collage. We couldn't decide which one photo or two we liked best so to stop the debate we did this. We are very proud of her riding her rocking horse! It was a gift from Grandma and Grandpa Larsen a couple years ago and she is now able to stay on top of it! Yeah!

This was also the first year we handed Makenna over to a "store santa". And if you look close at the background it wasn't at Wal-Mart! (It was at Cabela's. Can you find the Elk, Mountain Goat, Big Horn Sheep, Mule Deer and Black Bear? (If you find more than that let ME know.) It was FUN. Sheri and I guessed she would just EXPLODE once she was handed to Santa and then touched his beard. Nope, they got along fine.

'Kenna is doing really good this winter! Feeding is better, sleeping is better. She has had a couple colds which slow her down but overall things are going great.

This is not a flattering photo of Makenna or my mom, Mary. But Sheri and I liked it! This was taken after we got home from the Cabela's trip (the santa photo from above). It is hard work to travel, shop, eat, shop, eat and travel home. And when you have a good friend to cuddle with there is no reason to talk about your day!

Merry Christmas and Happy New Year to All!!! Clyde, Sheri and Makenna!

Another Costume

Well, I liked the TWO costume ideas Sheri had. And after getting the first one ready I really hoped we were done, for this year. I guess not. But the outfit based around the Kid Kart won't work for visiting people on halloween, I guess? So we finished another costume today. I won't tell you what it is... until after halloween. Look at the photos and if you can guess what Makenna is supposed to be you should win a prize, you won't, but you should. Clyde