28 September 2011

Politics and Stem Cells

Using adult stem cells from you own body is safe and harmless.

A recent article on what they mean in the political scheme this year:

“Protean”, from the shape-shifting god of Greek mythology, is a well-worn
adjective for describing the potential of stem cells. It works equally
well as a description of politics of stem cells, at least in the US.
After George Bush, Texan become President, restricted the use of human
embryonic stem cells, many scientist bitterly criticised him – and the
Republic Party – for closing the door on the most promising development
in medicine for decades. In the hyperventilated language of a 2003
article in the New England Journal of Medicine, “the Promethean prospect
of eternal regeneration awaits us”.

Now a Republican Texan would-be President, Rick Perry, is under fire, it
seems for taking these dreams seriously. Stanley Jones, a Houston
surgeon, in July, injected Mr Perry’s own stem cells to treat his ailing
back. As well, Mr Perry is directing millions of dollars into adult stem
cell research, which he sees as a potential boost to the Texas economy
and an alternative to embryonic stem cells. "It is my hope that Texas
will become the world's leader in the research and use of adult stem
cells," he has written. "With the right policies in place, we can lead
the nation in advancing adult-stem-cell research that will treat
diseases, cure cancers and, ultimately, save lives."

This sounds remarkably similar to remarks made by President Obama when he
loosened his predecessor’s restrictions: “these tiny cells may have the
potential to help us understand, and possibly cure, some of our most
devastating diseases and conditions”.

How has the scientific community responded? Judging from an investigative
feature in Nature, with great hostility. “We must protect patients from
risky treatments advanced by overzealous, even greedy, entrepreneurs,"
wrote Bettie Sue Masters, of the University of Texas Health Science
Center in San Antonio. The Food and Drug Administration is cracking down
on doctors spruiking stem cell treatments. "If Perry was treated in the
United States, it was clearly in violation" of FDA regulations, a former
FDA official told Nature.

Such is the Protean nature of politics. Once again stem cells are shaping
up to be a key theme in a presidential campaign. But this time will the
Republicans be selling hope, and the Democrats sour scepticism and
high-minded ethical reservations? The 2012 campaign will be an
interesting showdown for bioethics as well. ~ Nature, Sept 20

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24 September 2011

Never know

This is Liam's first experience being around a baby.

I have always wondered what it would have been like if we had gone on to have another baby following Liam. I wonder if having someone his size around would have helped to spur him on. Or whether it would have just been a constant reminder of a path his life could have taken but didn't.

In either case, we'll never know. Shawn and I just couldn't bear the pain of trying and losing again. And we didn't feel we could put our kids through it either.

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20 September 2011

Things change

We've had a change up of educators/therapists this year for Liam. The new school year started off with a bang with Irene barreling through. It delayed for a week us getting any services. We are just now this week settling into a regular routine.

Liam has a new occupational therapist and a new itinerant preschool teacher. I think both of them are going to be a great fit. Liam had his first sessions with both of them this week and he did so good.  I was so proud of him. It's so hard for him to use his arms yet he was hitting his switches and buttons just like they asked.And he was exhibiting more control doing it than I've ever seen.

I'm hoping a for a great year for him. We got off to a very slow start last year because Liam didn't even start receiving services until December. We felt like we were finally diving in when the school year ended and we stopped receiving all services.

So, lift up your glass with me and toast to a new year full of new ideas and possibilities for Liam. I know we are both ready!

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15 September 2011

Moving on

After two years of aids/CNA's, we just lost number 6. Not that I am sad to see her go. She was a 'nice' woman but she wasn't a good fit for Liam.

We started with R back in May. She had a small fear of dogs and even though we have three, she never let it bother her. One day we put Bandit, our largest at 50 lbs and loudest barker, in our laundry room because she was still fairly new and he would bark at her pretty loudly for the first few minutes of her arrival. She went to the door to the laundry room and taunted him through the glass. She made faces, would pretend to open the door, and all the while he was cornered in the room barking and growling for fear of his life. What do you think that did to our already skittish dog? He never grew fond of her after that.

R never really talked to Liam either. I knew she was quiet and would encourage her to talk to Liam about what he was watching or engage him in any type of communication. She just never did. I always felt bad for Liam, like he was alone in the room even though there was a body there.

This week, when R got here she said she needed to talk to me about Bandit. Apparently the day before when I had left before she did, Ian helped her finish up with Liam in his stander and Bandit barked at her. She accused Ian of not shutting him up until she was out the door. She said her nerves were shot and we needed to do something about him.

I understand her fear of the dog. But she has been working for us for 5 months and has never said a word. I reminded her that Bandit has never forgotten being cornered and taunted by her that day and that he doesn't bite. He just barks his discontent with her presence in his home. =)

That day she left Liam lying on my living room floor and walked out the door with out telling me she was going.

Ian happened to be walking through the house and saw her as she was going out the door.

The next day the manager called and said she quit. She said she just couldn't handle the dog, after 5 months working here and not one word until this week about it.

But, I'm not sad. It's a good thing. She wasn't a good fit but we stuck with her because we have an aid for such a small amount of time in the week. It wasn't the right person but I just dealt with it.

Please say a prayer that we get someone good in here for Liam. I see so many great people who interact so well with him but it seems like all we ever get is duds for in the home.

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14 September 2011

Blog hits

I'm really bummed. I just realized my counter (page views) is missing from the blog. I have no idea where it went. The java script for it is just missing from my layout. I loved seeing how many times someone has clicked on Liam's story and now it's all gone. We were up over 35,000 the last time I checked. Granted that's small stuff for the world wide web. But that was big time stuff for me.

I have the urge to add one again but feel like it's futile at this point. We have to start over again at zero.

Yes, I'm feeling sad about my missing counter.

No, it isn't silly to me.

It is nice to know that Liam's story is still being read even though it's still being written.

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Working on upper body strength and separation of movement today. Estim is on his lats and rhomboids to help facillitate reaching for the iPad. Our new goals are combining PT, OT, and speech into the same goal of utilization of the ipad for communication.

07 September 2011

Hurricane Irene you were mean.

Blue sky disappeared the day before she hit.
We experienced our first hurricane on August 27th when Irene came barreling through. She made landfall as just a category 1 but after 24 hours of hovering over the outer banks of NC she destroyed homes, toppled thousands of trees, and sent insurance adjusters scrambling to handle all the claims.

Our office ceiling had water leak through the sheet rock seems and the nail holes.
 We lost a few shingles on our roof and have a lot ripped loose but hanging all cockeyed. Our insurance company sent an adjuster out who said we qualify to get a new roof put on, new sheet rock ceilings in the office and kitchen and to have our hard wood floors sanded and refinished due to all the water damage.
Our driveway is barely visible.

There shouldn't be trees that close to that garage back there.

The kids could roam the street at lulls in the storm. It was the only way to travel because trees had toppled over every road allowing no access to anywhere.

A few houses down and the domino effect had house after house with huge trees on the lines blocking power to everyone.

We lost power right after the storm hit. We figured it would be back soon but when Irene just hung over us for 24 long hours, the trees couldn't take those sustained winds for that long and just started to topple taking down lines everywhere.

We got power back ofter three days. It's amazing we got it back so soon because so many were without and the damage was so significant. But the power companies, ahead of the storm, brought in crews to get everyone back up as soon as possible.

Liam cant stand the heat and going those nights without it was restless for him. Luckily Irene sucked all the humidity out with her so it was tolerable, but not enjoyable.

Loose, broken and tangled wires were everywhere.

People with chainsaws would show up and trim just a bit off the trees in order to make a small clear path. Many roads remained one lane for days.

Ian's tree fort was destroyed when the tree he built it in fell.

Three trees came down just to the edge of the garage and over our hauler trailer. Luckily they didn't have any damage.

We decided pool season was over after Irene came through. The storm sucked the cover off and buried it at the bottom of the pool with huge branches and leaves over it.

Ian and Shawn spent an entire day just chopping the water soaked wood from our tree that fell over onto our neighbors property, blocking him in.

Huge branches are hauled off to the front of the property where someday crews will come and pick it up. They have a huge job ahead with hardly a house to spare that doesn't have large debris sitting along side the road.

We also lost phone, cable and internet for a whole week. After much convincing to our cable company that it wasn't just us and a single problem with our home, they started searching the claims and saw that they were many of us out in our area. The numerous trees in a row a few doors down were what had damaged our lines.

Life is back to normal for us. We still have more clean up and at some point the repairs need to be made, but we were fortunate the water table was low and flooding in our area was not a problem. A lot of people have been displaced.

From living in the midwest, to the west coast, and now on the east coast, we have been through tornadoes, earthquakes, and now a hurricane. This is the first experience to damage our home. But I'm not sure which one I prefer.

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02 September 2011

Good thing Liam likes being cold when he sleeps. His tubing popped out somehow and this is how I found him this morning. Laying in 10 oz of cold formula didn't even wake him up.