Been a while

•5 November 13 • Leave a Comment

It’s been a while so I figured I’d put up a quick blog. Things have been very busy here lately. We did attend the Abilities Expo recently and we found a bike that lil squishy would be able to use. We are hoping to figure a way to come up with
the money but in the mean time here he is giving it a go on the bike.

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June 30th is Arthrogryposis Awareness Day

•15 June 13 • Leave a Comment

So June 30th is Arthrogryposis Awareness Day. It is the day that the founder of AMCSI was able to get everything together. In case you’ve been living under a rock ūüėČ or you have some how stumbled upon this page that is what my lil squishy was born with. It means he has crooked joints. He was born with crooked wrists (which made it look like he was missing a hand), his fingers and thumb were in his palm, his arms were stick straight, his knees were straight but able to bend (though they bend as well as typical knees now) he also had bilateral clubbed feet, his left foot was caught in an amniotic band and that caused him to not have toes on that foot, he also has¬†an unusual left hip. It is not a typical ball-socket joint but it is still in it’s socket. Through lots of physical therapy, occupational therapy, casting, splinting, surgery and a little speech therapy, he’s just a typical¬†5 year old. He wears AFO’s on his feet with shoes, but at home walks around with out them. He also has a kaye walker for safety at school. When it’s rainy/snowy and walking into the school it’s used to keep everyone from knocking him down (small children are not known for being careful or slow) or slipping.

If you want to have more information or support this group please visit http://www.amcsupport.org/ 

2013 or the 1950’s

•10 April 13 • 1 Comment

Many of you know that I don’t generally break the progress of my son to yell/scream/discuss things that are to do with other than¬†his progress so I hope you all realize how much the matters.

Those of us who have children with special needs or know someone close to us or they themselves have special needs know of our countries dark past of when people with disabilities, handicaps or any discernable differences from the¬†“norm” were put into institutions. It just wasn’t¬†commonly thought that they should be at home being taken care of by family and allowed to grow just as the “normal” people did. It was that something that was lurking in the “skeleton closets” of homes around the country. However, we have come a long way in that thinking, but we still seem to be getting stuck and hung up on some things.

Our beautiful and lovely friend Bonnie, who also has AMC (arthrogryposis) but is affected differently,¬†has been kicked to the curb at her school and is no longer allowed to eat her lunch on campus. Why you may ask? Well because Bonnie eats by g-tube.¬† This came about by some policy change by the school district.¬†Click here for the story.¬†Bonnie’s school has been wonderful to her for over 3 years according to her mom and they are trying to understand why they think this change is ok. I won’t even pretend to understand the reason for the¬†policy change. Bonnie is not fed a “normal” g-tube diet. She does not exsist on the formula that they use for most people with g-tubes. Bonnie is fed real food in her tube which is refered to a BD or Blended Diet. This means she gets to have real food through her tube. For more information on BD or if you are on facebook. I also won’t pretend to know all the ins and outs of a BD for a g-tube. However, I do know that were I put into a situation that required myself or one of my children were to require a g-tube I would prefer that we were having real food via a BD and not the formula. I would also expect support and not opposition in that choice.

Here is Beverly showing how they feed Bonnie.  A group showing support and love for Bonnie and her way of eating.

I’ve been sick over the way Bonnie has been cast aside like this. I have had the luxury of stepping aside when it gets too much to handle having to think of how she is being treated. Her mother, Beverly, has not been able to do the same. She is trying to let Bonnie be a kid and that includes her social time at lunch. We need to start remembering that we are all human beings first and foremost. Everyone should be treated as such.

Please consider signing your name to the petition and please share this story with others.

Much ado about everything.

•15 February 13 • Leave a Comment

Please forgive me for being lame and not updating this as I should. Lil squishy had his hand surgery in December. He is now able to open his hand up more and able to grab things he was not able to before. So we are pleased with his surgery and the outcome. It was an “easy” surgery as far as recovery went. He was only put into soft bandages and then after a couple of weeks it was removed and he had new hand splints made. We have also just picked up his new walking sticks. This will hopefully help him with stairs, curbs and a little more of the rough terrain. It’s mostly a trial and error process of finding what works out best for him.

Also we are again doing the Miles for Miracles Program. We are partnered up with a runner who will run the Boston Marathon. Here is a link to his fundraising page if you would like to donate. http://www.milesformiracles.org/boston/garydionne 

Catch up

•27 December 12 • Leave a Comment

I can’t believe how long I’ve let this go.. It’s crazy.. So many things have been going on and I won’t write about all of it here right now. However, we will be heading in for surgery tomorrow for lil squishy for his thumbs. He will be having something called a z-plasty..This should allow for a better range in his thumb.. he is able to move his thumb quite well so the muscles and what not are there however, his skin is keeping him from pulling the thumb out further.. This surgery will, we hope, allow him to better grasp things like cans, bottles, little boxes etc.. It wasn’t an easy decision, not that deciding on¬†any surgery ever¬†is easy.¬† Here is a link to a basic definition sans photos..¬†http://en.wikipedia.org/wiki/Z-plasty

Medical & Politics

•18 July 12 • Leave a Comment

First thing first.. I don’t particularly like to get political or what not on this blog since it’s supposed to be about lil squishy’s accomplisments and surgeries and the wonderful progress he makes.. However, this is something that has been bothering me quite a bit lately..

The whole “Obamacare” thing going on that everyone is having such issues with. First and foremost I believe all citizens have a right to basic health care. Also I’d also like to say I am the first to agree that not all of the “Obamacare” is perfect, but you I’d like people to understand from my point of view that it’s not all bad.

Did you know that if it weren’t for “Obamacare” that my son could be denied medical services from insurance companies because he has a pre-exisiting condition? Heck even I could be denied on the account that I have allergy induced asthma even though I rarely ever need my inhaler.¬† Did you also know that most insurance companies have a “lifetime” cap that with “Obamacare” is now removed so that you won’t end up getting denied services through¬†them? Do you have any idea how expensive equipment is and surgeries are? Yes I am aware that things are overly priced and believe me I know. I do look at our insurance statements and itemized bills and think WTF why does that shot cost so much so please don’t lecture me on the cost of things.

I am also aware that everyone is entitled to their opinion and that’s fine, but my son is worth every bit as much as everyone else and deserves to get the care he needs and not have to worry about things like life time caps or being descrimated against because he was born with a condition.¬† I get that many people have a problem with parts of the “Obamacare” but calling the whole thing crap is wrong especially when you take issue with only a few things in it. I’m not saying this to debate anyone but really just trying to make it so that people are aware that even some of those closest to you are affected by “Obamacare” and not necessarily in a bad way.¬† Please keep that in mind when you bash the whole of something just because you have a problem with some of the individual parts.

A beginning

•9 June 12 • Leave a Comment

Kneeling

For some who don’t know this is a big deal. This is a stepping stone to the possibility that he will be able to get down and up in the middle of no where with nothing around. I bet many of you take for granted the ability to get up off the floor without using furniture to get up because I know I do.¬† But here he is able to get down on one knee and get up. It will take a lot of practice and much more control but he is on his way to doing something many of us take for granted and boy does it feel great watching him do it ūüôā