I could not cut the AVI into small enough chunks so I posted to YouTube and will link back to it, or upload it or somthing? I don't know. It will take a long time to load, I do know that!
Tuesday, September 29, 2009
Monday, September 28, 2009
Somthing new
Makenna went to work with me two days last week. She stayed home from school Thursday with mom, because she had a touch of the stomach flu Wednesday night. By "touch" I mean I changed the bedding in her crib 4 times, it was a long night of vomitting. But mom had to work Friday. So Makenna went with me Friday and Saturday. This video was taken last Friday, Sept. 25, 2009. It shows her in her Kid-Kart, on the job and two of the "sensory issues" she has: 1. being outdoors, 2. touching leaves, grass, animals with long hair......... not to mention already having a queasy tummy. But she does like being on the job, around people, and the chance to explore new things. I do enjoy having her with me but as she gets older and more demanding for attention I find taking her to work is like, "firing two good men". Credit is due to my mom. She came along on Saturday and watched Makenna so I was able to get something done!
The people in the video are: my brother Ray (loading stuff in the pickup) and his wife Laura. They are the ones building the new home. The other person is Tavis Auwerda, from DJA Construction. This was his first job with his new concrete stamps. I really like the way it turned out. You can kinda see the stamping in the video. It looks a lot better now that the "home made" forms were stripped and the release agent washed off.
So I guess this video is about Makenna and concrete stamping. I have wanted to do a stamped concrete job for years but did not want to own all the stuff to do it....Thanks Tavis.
The people in the video are: my brother Ray (loading stuff in the pickup) and his wife Laura. They are the ones building the new home. The other person is Tavis Auwerda, from DJA Construction. This was his first job with his new concrete stamps. I really like the way it turned out. You can kinda see the stamping in the video. It looks a lot better now that the "home made" forms were stripped and the release agent washed off.
So I guess this video is about Makenna and concrete stamping. I have wanted to do a stamped concrete job for years but did not want to own all the stuff to do it....Thanks Tavis.
Tuesday, March 10, 2009
Sunday, March 8, 2009
Howdy
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.
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.
Tuesday, February 24, 2009
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!!
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!!
Friday, February 20, 2009
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!
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!
Friday, January 23, 2009
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!!
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!!
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