Spread the Word

Ni@@er. Kike. Guinea. Dune Coon. Blanket A$$. Wet Back. Chink.

These are words that wound. They hurt.

They are words you wouldn't dare utter in public.

However there is one word still used today that is used on a daily basis, probably every 30 seconds or faster.

Retard

By definition, the word retard means

–verb (used with object)
1. to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.
–verb (used without object)
2. to be delayed.
–noun
3. a slowing down, diminution, or hindrance, as in a machine.

This is by the standards of dictionary.com . But they also give another definition when used as a noun:

4. Slang: Disparaging.

a. a mentally retarded person.

b. a person who is stupid, obtuse, or ineffective in some way: a hopeless social retard.

Did you notice that a mentally retarded person is grouped in the same disparaging category as a person who is stupid, obtuse, or ineffective in some way? I did.

Now take a minute to do an image search on the word "retard". Any search engine will work. Google, Yahoo, Internet Explorer. Take your pick.

What images did you come up with? I know that you came up with at least 20 pictures of a person who has Down syndrome. You also saw the picture with the caption "Arguing on the Internet is like running in the Special Olympics. Even if you win, you're still retarded". Even Encyclopedia Dramatica has an entry. (** I wouldn't look if you don't want to get seriously pissed off**)

kidshealth.org doesn't paint a very pretty picture either. According to them:


Intellectual disabilities happen because the brain gets injured or a problem prevents the brain from developing normally. These problems can happen while the baby is growing inside his or her mom, during the baby's birth, or after the baby is born. Many times, though, doctors don't know the cause.
Here are some problems that can cause intellectual disabilities:

• The mom gets certain infections or sicknesses while pregnant.
• The mom takes certain medicines, illegal drugs, or drinks alcohol while pregnant.
• There's a problem with the baby's genes, which are in every cell and determine how the body will develop. (Genes are inherited from both parents, so a baby might receive genes that are abnormal or the genes might change while the baby is developing.)
• During childbirth, the baby doesn't get enough oxygen.
• After being born, the baby gets a serious infection.
• Any time in life, a serious head injury can hurt the brain and cause intellectual disabilities. Some of these disabilities are temporary and others can be permanent. (That's why it's important to wear your bike helmet and always wear a seatbelt in the car!)

In the medical sense, Aiden is both mentally and developmentally delayed. Once Aiden begins kindergarten, the school district will want to do an IQ test on him. By educational standards, if he "scores" at 77 or below, he will be classified as "mentally retarded". The lower the score, the more services he qualifies for. Which is somewhat backwards. Ask a loan officer if your credit score is lower than normal if you get better interest rates. The higher your ACT or SAT score, the more universities and colleges want you. Even in sports, the team with the lower score isn't the one taking home the trophy. But that is just my opinion, I could be wrong.

There is a push to change the medical term "mentally retarded"  to "intellectually disabled". I don't necessarily agree with that. In my mind, "disabled" means "unable to".  Aiden isn't "unable" to do anything. He WILL do the things he is trying so hard to do, it just takes him longer to do them. Hence the term "retarded" fits more than "disabled".

Aiden is far from stupid, obtuse or ineffective in some way. Quite the contrary. He can solve problems. Stupidity can not learn. Aiden CAN learn.

The most we can do as parents is to educate.

One time when Aiden was in the hospital, Chris and I were going up to the floor he was on. In the elevator was a woman and two men. One of the men was acting goofy. The woman laughed and said, "Never mind my brother. He's retarded." My response? "Really, so is my son. He has Down syndrome." The woman apologized for her remark.

Another time, I was in yet another elevator going to a meeting. A woman tripped over her own feet. Her response, "My feet are so retarded!" I politely said, "That is not a word we use." This woman knows my child. She knows his diagnosis. She knows the stigma behind the word. She is a teacher! Once she thought about what she had said and realized to whom it was said, she apologized. She said that as a teacher, she should know better. I agree, she should have known better.

I often pose the question to people who use the word flippantly. "Do you think Aiden is retarded?" And I mean it in the same sense they meant in using it. To be stupid. Of course the answer is always "no". No one considers a child with a cognitive or learning delay to be "retarded". My God, that would be wrong! But yet, when I explain that calling someone "retarded" is laying the path stones for making fun of someone with intellectual disabilities, they are taken aback. Well, they should be.

If you let the word slip out of your mouth, without thinking, while making fun of something stupid, someone is going to hear it. That person then says it, thinking it is okay. Another person hears it and so on. The human vocabulary can be a vicious cycle. Before you know it, your child is calling my child a "retard" on the playground and um, I AM going to have something to say about it. And no, you probably won't like it.

A conscious effort has to be made.


Which is why, the Special Olympics Committee has began the "Spread the Word to End the World" Campaign. To stop the unconscious use of the word "retard" in it's derrogative meaning. It's happening right now. Across the United States, people on college campuses, in high school cafeterias and workaday offices are working to “Spread the Word to End the Word.” The goal: make people stop and think about their hurtful and disparaging use of the word “retard.”   

What It's All About
Spread the Word to End the Word is raising the consciousness of society about the dehumanizing and hurtful effects of the R-word and urge people to pledge to stop using it as an insult, casual or intended.  (Take the pledge right now! )
"The earlier we can start teaching this awareness, the easier it will be to reverse the language, " wrote James Saetern of Sacramento, California, in an e-mail to Special Olympics. "This is not just a day of awareness, but a movement to end hate as a whole."

What's Going On Today
There are more than 700 events and activities happening throughout the United States – and around the world. Celebrities and just plain folks are putting on Spread The Word T-shirts (order one for yourself), buttons or stickers or making signs and placards and banners to make it clear that usings the word "retard" as a term of derision is just as cruel and offensive as any other slur.
One visitor to the R-word.org site said it well: "It was a commonly accepted term when I was growing up and is handed down from generation to generation like all strange sayings that never die and kids keep saying every year. Well, I have chosen to break the cycle and am teaching my kids how wrong it is."

How It Started
Created by young people with and without intellectual disabilities, Spread the Word to End the Word is one element of Special Olympics’ vision of a world where everyone matters, where everyone is accepted and, most importantly, where everyone is valued. Leading the way in promoting acceptance of people with intellectual disabilities, Special Olympics opposes prejudice and discrimination, continuously working to dispel the negative stereotypes associated with this population — the use of the R-word being one such stereotype. In a world that has worked to eliminate pejorative racial and ethnic language such as the “N word,” among others, the R-word is gaining popularity.

Today, young people across the country are leading local efforts to raise awareness and collect pledges on www.r-word.org from peers and the community to vow not to use the R-word. Actor and activist John C. McGinley, of the hit show “Scrubs,” is helping with this effort by making national media appearances on behalf of the campaign.

Stop using the word in everyday conversation. It is easy to do. JUST DON'T DO IT! If someone uses the word in your presence, educate them. You have that right. It's offensive.


Ni@@er. Kike. Guinea. Dune Coon. Blanket A$$. Wet Back. Chink. Retard.

These are words that wound. They hurt.

They are words you wouldn't dare utter in public.

Take the pledge.

In Like a Lamb, Out Like a Lion

March is messed up this year. All the bad weather is supposed to be at the beginning of the month, while all the nice weather at the end of the month.

As if the dime sized hail wasn't enough to beat the tulips to death on Thursday.........

 

 

It is now snowing.......

 

And the weather men are predicting up to 3 inches. Aiden could care less, until he gets severe cabin fever. So far he has managed to destroy the living and dining rooms. But right now Phineas and Pherb are on, so he is occupied.

The Candle Game – You play, we donate to charity!

The Candle Game – You play, we donate to charity!

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A Knight in Shining Armour

CalMac’s “shining star”awarded MBE
29 December 2007 Staff and customers at ferry operator Caledonian MacBrayne are celebrating the award of an MBE to Eric Ruthven, clerical assistant in the company’s Mail Room at Support Services in Gourock. Eric (43), from Dunoon, has been working with CalMac for nearly 11 years and has been awarded an MBE in the Queen’s New Year Honours List. The Honour has been awarded for services to the community in Dunoon, Argyll. After leaving school, Eric attended the Fitzgerald Centre in Greenock and was involved in several courses at James Watt College in Greenock as a student within the faculty of learning support. During his regular ferry travel from Dunoon to Gourock, he established a rapport with members of staff in CalMac offices, on the ships and with fellow travellers. He made several personal contacts during this time with staff, who were always keen to have him in the Gourock office helping out until it was time for his ferry back to Dunoon. An approach from his tutor led to Eric being offered work on a more formal basis after an initial period of unpaid work, one day a week. Gradually it became apparent that CalMac staff were able to offer considerable support to Eric who has gone on to considerably enhance his writing, reading and communication skills, leading to greatly improved levels of personal assurance and self-confidence. Eric has now been employed as Clerical Assistant with the Company since January 1997. Eric Ruthven is now well-known to most regular travellers on the Gourock to Dunoon ferry and is a much-admired member of staff. CalMac Chairman Peter Timms said: “Eric is a remarkable individual who has overcome his Downs Syndrome disability to achieve astonishing results which have had a significant effect on the wellbeing of many other people including his immediate family responsibilities. This has elevated him to his unchallenged status as CalMac’s most popular member of staff in the Support Services operation at Gourock. He now takes his share of responsibility in the Mailroom operation and handles other responsibilities related to Brochure distribution. CalMac staff continue to contribute to Eric’s wellbeing in cooperation with his medical and social advisers. He is a fully integrated, highly motivated and hugely popular member of the CalMac community. He is unfailingly willing and helpful, and extremely popular with staff and customers alike.” As well as working with CalMac, Eric spends a lot of his own time raising money for various charities, church activities and local community causes, through sponsored walks and runs in particular. He has raised many thousands of pounds through his remarkable efforts and continues to amaze with his diligence, commitment and achievement. His most recent triumphs include participating in the Dunoon Relay for Life annually where he has raised over £1,000 on each occasion for Cancer Research UK Scotland out of a total of £30,000. Speaking on behalf of all his colleagues, CalMac Managing Director Lawrie Sinclair said: “Eric has met some massive challenges throughout his life with remarkable fortitude and a great deal of humour and resourcefulness. None of this has affected his cheerfulness, his friendships, his commitment to CalMac, or his willingness to raise money for charities while he is able. He is a remarkable individual who has led a lifetime of achievement. This award has brought a great deal of satisfaction to us all and we share in the privilege of knowing and working with our very own shining star!” For further information on the contents of this News Release, please contact Hugh Dan MacLennan, Communications Director, Caledonian MacBrayne. Tel: 0776 435 4021; e-mail hugh.maclennan@calmac.co.uk.

Referrals

Aiden had an appointment with Dr. Pediatrician today for his weight check. He is still going up on the curve. We discussed what the nutritionist said. And we'll use WIC for all the additional calories that Aiden is going to be force fed. He'll just be on the "typical diet" according to WIC. Might as well make them jump through some hoops themselves.

We also talked about what cardiology said and the referrals they want. Dr. Pediatrician isn't convinced that Aiden's lack of weight gain is due to GI issues, but made the referral to appease the heart docs. If it is genetic, then something else is going on besides the Down syndrome.

Now we just wait on the calls from the new doctors.

And Dr. Pediatrician FINALLY got to see the ear tubes, she was so happy! She has never been able to see them until today. She said that they were black.

Baby Blues

Meeting the Nutritionist

Today was Aiden's first appointment with Dr. Food. He weighed in at approximately 19.8 lbs. I say approximately, because she didn't have an infant scale and Aiden can't stand up on the big people scale. I had to be weighed first and then be weighed while holding Aiden. I hate scales and refuse to put myself on one. I know that I still do not have my pre-Aiden body back. I see my butt on a daily basis and I'm not happy with it. I do not need a scale to tell me I have more than a ghetto booty.

But I have lost 13 lbs since January. Only 25 more to go. The longer Chris is at home (you'll have to email me for permission to view that blog) and Aiden's medical team stress me out, I should be back to my happy size 2 before I know it.

Anyhoo, the nutritionist brought out the growth chart. I immediately inform her that Aiden won't even register on that since it was the one for "typical" kids. She asked if Aiden had cerebral palsey. (Yes, I am still scratching my head at that one. I mean, granted Aiden's physical characteristics of Down syndrome are mild, but come on!) I said, "Nope, Down syndrome." She went to get the "downs chart". Aiden is in the 25th percentile on height, but barely breaks the 5th percentile on weight.

Then we went over the medical issues. All the heart issues. Her first thought was heart related. Yep, that is the common thought until I told her what the last surgical conference said. We went over the lack of thyroid issues. It could be genetic since I had a body with relatively no body fat before Aiden. It could be genetic in the sense that something else could be wrong with my child. It could be congenital.

Aiden is receiving enough calories from the pediasure to maintain the body of a chunky child. However, Aiden is not chunky in any way shape or form. So, this presents a complicated case. (Yeah, like anything Aiden related can be simple.)

Her thought is to plump him up by feeding the child more. More protein. More dairy. More anything that the child is going to eat.

The Sweet Child of Mine

Is a manipulator.....

The Little Boy decided that he should be able to play the sympathy card last night. I put him to bed shortly after 8:30pm. And he played. Then he got quiet. Chris went to check on him and the Little Boy looked at Chris with his sad "puppy dog" eyes. This got Little Boy out of bed and allowed to play even longer, at least until I put him back in bed at 10pm.

I went to bed shortly there after. To which Chris decides to come into the bedroom, turning on the bedroom light, scaring the crap out of me, asking when he could take another pain pill, decided against it because the Little Boy was still awake and wanting out of bed.

Chris finally got him "almost to sleep" and put him back to bed.

"Almost to sleep" isn't going to cut it.

11:30 last night, Little Boy is screaming because he wants out of bed again. I got out of bed and handed him to Chris with the reprimand "You took him out of bed, you deal with it." and I went back to bed. I don't know what time Chris convinced Little Boy to go back to sleep.

6am this morning, Little Boy decided he didn't want to sleep for any longer and was up ready to play.

Happy World Down syndrome Day

If you haven't noticed on all the Down syndrome related blogs, today is a very special day. Today is World Down syndrome Day. If you are scratching your head as to why today is the official day for celebrating Down syndrome, the connection is 3/21. Down syndrome is the result of having 3 (one additional) chromosome 21.

Today's celebration is even more special because it marks the 50th anniversary of the replication of the 21st chromosome causing Down syndrome.

We celebrated of course. The first thing we did was make a cake. I bought yellow cake mix and white frosting. But I also bought food colouring gel to turn the white icing blue. (That is about the extent of my creativeness in the kitchen....) Aiden was scared of the mixer, so I let him mix the batter with a spoon. We only had one egg fatality, when he threw the egg on the floor entirely missing the bowl.

We also planted 21 tulips in our little piece of "Holland". Aiden had fallen asleep by this time, leaving me to plant the tulips by myself. Which is fine, because it had started raining while I was planting them.

And Chris took lots of pictures...

Make video montages at www.OneTrueMedia.com

The New Absolute Must Have Thing to Eat

Aiden used to love grilled cheese sandwiches. I asked him if he wanted one the other day and he said "Yes." I fixed him his sandwich, cut it up into little pieces. Those little pieces were thrown 6 feet across my living room, uneaten.

I fixed me turkey club sandwich. Aiden liked it way much better.

The next day, I fixed a peanut butter and blackberry jelly sandwich.

Aiden is in love with peanut butter and jelly.

Compared to Others, Aiden is Such a Good Patient

Chris had his surgery today for the bone spurs located on his big toes on each foot. His looked much like rhinocerous (hey! I actually spelled that right by phonetics!) horns sticking up and trying to push through his toenails. Yeah, I know way TMI!!

We left here at 10:00am and made it to the hospital where Chris was undergoing said surgery. This is not one of the hospitals Aiden likes to frequent.

Within the hour, Aiden had the waiting room of visitors/patients and the entire pre-op nursing staff. There were even nurses coming from other wings to meet the Little Boy.

While Chris was in surgery, Aiden pretty much had the run of the surgical waiting area. There were a few women there who actually wanted to get on the floor and play with him. Of course, he was in Heaven with all the attention he was getting.

One of the nurses had to brag on how well behaved Aiden was while we waited the 5 hours we were there. He didn't throw any fits and didn't scream. He was extremely tired though. He refused to nap while we were there. Too many nurses to charm.

But, Aiden is a much better patient than Daddy is. I put it on the private blog to save Chris some humility.

The T21 Traveling Afgan Project

Have you seen the movie or read the book The Sisterhood of the Traveling Pants? Well, CJ at Little Miss E has branched off on that idea with a blanket that she has crocheted.

And here is what CJ had to say about the project:

There is a T21 Afghan is making an amazing adventure!!

The handmade blanket is traveling from one family to another who has a family member with Down Syndrome. The family member can be of any age, from birth through the senior years. The family can also be located anywhere on the globe.

The afghan will travel from one family to another, along with a journal.

Each family, upon receiving the afghan, takes a picture of their family member with it and we post it on on this blog under the Label "T21 Travelling Afghan". After having the afghan for bit, the family writes a note in the journal and sends it off to the next family,who's address I will email to them.

I would like to see the afghan leave each family within a weeks time. You may certainly ship it out sooner than that, if you prefer! While we would all love to hang onto it for as long as possible, we have a huge list of families waiting for their turn!

I would LOVE to see the afghan hit all fifty states and as many countries as possible! Let's send this baby far and wide to include all the families who would like to participate!

To sign up, please click here.

Please post about this on your blogs, FaceBook, MySpace, Twitter, etc. with a link back to this page. That way we can spread the the word out as far and wide as possible.

Shipping cost will be the responsibility of the sending party, therefore, I will make a smaller sized afghan

Aiden and I are part of the T21 Traveling Afgan Project. But there are still several states needed to complete the United States tour before shipping to the other families around the world.

Alaska
Arizona
Arkansas
Delaware
Idaho
Louisiana
Maine
Mississippi
Missouri
Nevada
New Hampshire
New Mexico
Rhode Island
South Dakota
West Virginia
Wyoming

 If you live in one of the above mentioned states, please email CJ to get on the list! Now there are some rules:

The Rules:

1. It's never too late.

2. The afgan WILL be sent to you, no matter WHERE you are.

3. You must have a family member with Down syndrome.

4. There is no age restriction.

5. Shipping to the next family is YOUR responsibility.

6. You must send (email or snail mail) pictures of your family member with the afghan.

If you fit these rules, sign up!

Here's how!

To sign up, please send an email (subject: T21 Afghan) to TheT21TravelingAfghanProject@gmail.com with the following information:

1. Your Name

2. Address

3. Blog url

4. Name and age of child or person with T21

5. Whether or not you would be willing to ship the afghan out of your country of

Once you get an email back from CJ, you are on the list. If you do not hear back from her, you are not on the list!

How you can spread the word!

Add The T21 Traveling Afghan Button to your blog or website. Grab the button, spread the word!

March Madness 2009

 

For more Wordless Wednesday, click here. 

Spring Has Sprung

Today is a really pretty day, so I took Aiden outside to play. He was a bit hesitant at first with nature, the grass specifically, until I started playing in the leaves. Then Aiden was enthralled with being outside. It didn't take long for him to be all over the yard.

He was enjoying himself so much outside that he decided to take himself for a walk to the Jeep to check the tire pressure.

Once I distracted Aiden enough to move away from the Jeep, he decided that he wanted to show my how to go up the steps.

Oh, and the tulips have started to bloom.

Happy St. Patrick's Day

Try JibJab Sendables® eCards today!

We Have a Bear in the House

 No, not really. But Aiden is mimicking the walk from Disney's A Jungle Book.

Aiden has been learning to walk on his hands and feet. I've tried to get video of his newest accomplishment, but when he sees any camera come out, he automatically starts posing. Which makes it quite hard to photograph him doing anything that might would be considered future blackmail.

Bloggy Stuff

This award was given to me by Datri over at Opposite Kids

"These blogs are exceedingly charming. These kind bloggers aim to find friends and be friends. They are not interested in self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships will be propagated. Please give more attention to these writers. Deliver this award to eight bloggers who must choose eight more and include this cleverly- written text into the body of their award."

And I pass it on to:

Finding Normal
Jonathon's Journey
Elliot's Expeditions
The Spohrer Family
A Redeemed Sheep
Jaxon's Fight
Class of 2008
The Bird Flock

And the Surgical Conference Said....

At the present time, Aiden's cardiology team is not convinced that the lack of weight gain could be due to the mitral valve leakage. So, surgery is on hold and we are being referred to a geneticist and the GI specialist.

Now, there are even more unanswered questions.

And for Chris.....

According to Chris, I type way too much and don't put enough pictures of Aiden on the blog. Yes, he's a guy... he requires pictures, not words.

So, here are some pictures of Aiden from the week..

 

 

The last picture is the incision from the cutdown cath on Tuesday. It's much bigger than I had anticipated.

A Meeting with School

This morning Aiden and I went to one of the local elementary schools to meet with the 3 - 6 year old program team. The team consists of the special needs educational director, a speech therapist, the teacher and a psychologist. Aiden was polite and said "hi" and shook hands with everyone.

We then went to a conference room and I was asked to talk about Aiden some. I told about his heart and surgeries, about what motivates him, what he likes to eat and play with. We talked about Aiden going to the Little Light House. Aiden's EI Resource Coordinator, Susan, was there also and we talked about what resources Aiden is currently receiving.

Susan asked about Aiden going to school on Fridays since he attends the LLH the rest of the week and I asked about him also going when the LLH is out of school for teh extended breaks. The educational director said that they will allow for the exception. So that is good. Aiden can slowly **insert banned word here** into the school without being overwhelmed.

We talked about the class. Currently, there are 10 kids and 4 adults - 1 teacher and 4 paras. Next year, several of the kids will be transitioning to higher grades - kindergarten and first grade. So, Aiden will be one of 8.

The school will not do an evaluation, instead they want to use the evaluations from the LLH and Aiden's private therapies. SoonerStart no longer does a transition evaluation, but Susan had the latest IFSP from August.

The school wants to hold off until August to do Aiden's IEP. That way if he meets any goals over the summer, a new IEP will not need to be completed as the school year starts. Aiden will not be eligible to go until after Labour Day anyhow, but the IEP will have to be done before Aiden's 3rd birthday in August.

We then went into the class room and met the paras and some of the kids. The class room is huge, but I do have some safety concerns. There is a full bathroom and the door is kept open, apparently at all times. And the main door leading to the hall was open. For a certain Little Boy, these doors will lead to major curiosity and possibly taking himself for a walk.

The class has it's own private playground in a fenced in area. I did ask about inclusion with the rest of the school. The teacher said that inclusion happens a lot depending on the individual child. The class also takes field trips to the mall and grocery stores to socialize the children. Sadly, not all of the children go everywhere with their parents. I had to bite my tongue when the teacher said that. Aiden goes out into public all the time; he's definatly a social little boy.

I did ask that Aiden not be babied. Everyone agreed that it would be hard as he was so little and cute. Okay, whatever, but also keep in mind that he will be a 3 year old and I expect him to be treated as so. The only one that babies Aiden at home is Chris and that is because Chris considers Aiden still a baby and always will. And with Aiden, if he thinks being cute will get him out of doing something he doesn't want to do, by God he will be as cute and flirtatious as he deems necessary to get his way.

The ST for the school asked a ton of questions about Aiden and wanted me to get her all the information. I told her I could make it really easy on them and me. I gave her the url for the blog. They can learn all they want to about Aiden and then some. LOL!!!

So, that was mostly painless. I did manage to shed some tears as we were talking about the upcoming surgery. Yes, it is a sensitive subject with me and I'll cry if I have to.

Now we are waiting on a call from Dr. Pediatric Cardiology with the results of the surgical conference.....

My Twitter Mosaic

Get your twitter mosaic here.

I have a Twitter, I just never remember to update it.

Oklahoma Special Olympics T-Shirt

As we were sitting in the waiting room for Aiden to return from his cath lab on Tuesday, I went through my mail. I hardly ever go through my mail as I'm generally reading blogs and status updates on Facebook. So, I had a bunch of mail in my purse.

One of the items was the Spring flier for one of my favourite stores, Eskimo Joe's. Which everytime I get a flier, shopping must be done. I see some shorts I want and Chris wants a hat. The hat is free if I spend $35, which won't be a problem, a normal trip to Eskimo Joe's is around a $100. Then I looked to the right of the page. And I want this shirt.

 

It is the Summer Special Olympics shirt. The proceeds benefit the Special Olympics of Oklahoma. Chris decided he wants one also. I'm still waiting on the SOC to send/release the order form for the End the "R" Day shirts, but I've waited 2 weeks for that.

How the Heart Works - The Heart House

This is a really neat illustration of the heart from the Children's Heart Institute


To simplify how blood flows through a normal, healthy heart think of the heart as a house with:

• 4 Rooms (Chambers)
• 4 Doors (Valves) • 4 Big Hallways (Vessels)
• 4 Small Hallways (Vessels)

The Rooms (Chambers) The heart has 2 small back rooms: The Right Atrium is the room to the right. The Left Atrium is the room to the left. The heart has 2 large front rooms: The Right Ventricle is the room to the right. The Left Ventricle is the room to the left.

The Doors (Valves) All of the hearts' 4 doors only open one way: The Tricuspid Valve is the door between the Right Atrium and the Right Ventricle. The Pulmonic Valve is the door between the Right Ventricle and the Pulmonary Artery. The Mitral Valve is the door between the Left Atrium and the Left Ventricle. The Aortic Valve is the door between the Left Ventricle and the Aorta.

The Hallways (Vessels) There are 2 big and 4 small entering hallways: The Superior Venacava is the big hallway (vessel) that brings blood back from the head and top part of the body. The Inferior Venacava is the big hallway (vessel) that brings blood back from the lower part of the body. The 4 Pulmonary Veins are the smaller hallways that collect blood from the lungs and sends it to the left atrium. There are 2 big exiting hallways: The Aorta sends blood to the whole body. The Pulmonary Artery sends blood to the lungs.

The Plumbing (Coronary Arteries) As in your house the heart house also needs plumbing. The plumbing in the heart house delivers fresh blood from the aorta to supply the walls of the heart with blood. Remember the walls of the heart are very important muscles which squeeze and relax so the heart can push the blood out. The walls of the heart are made of muscle. When the walls squeeze (contract) they push the blood out to the body. When the walls relax they allow the heart to fill with blood again. This cycle happens about 70 times per minute and so to do this kind of work the muscle of the heart needs to get enough blood. The arteries which supply the walls of the heart with blood are called Coronary Arteries. Those arteries are very important because they bring fresh blood to the walls of the heart which needs lots of oxygen. Should any of these arteries be obstructed the blood will not flow to the muscle of the heart and this condition is what we call a heart attack. Heart Attacks happen when there is no blood going to supply the muscles of the heart.

The New Pepsi Generation

 

For more Wordless Wednesday, click here

Cath Lab/Sedated Echo March 2009

For some unGodly reason, besides stress, I was up at 6:00 this morning. The good thing about that is I had a whole hour to myself before anyone else in the house started stirring. I gave Aiden his much detested Pedialyte at 6:30, while he was still asleep, in hopes that he woud drink it. He didn't.

When I got Aiden up, it was 74* outside, so I dressed him in shorts and finished packing for our "Hotel St. Francis reservations" overnight hospital stay. Tomorrow the temperature is supposed to be in the 40s. (There is a saying in Oklahoma - If you don't like the weather, wait 24 hours and it will change.) So, I packed Aiden some jeans and a long sleeve shirt. The beloved GloWorm went into the bag as we have to have it every time Aiden goes into the hospital.

At 9:00, Chris loaded my Jeep up for me with Aiden's cooler (he'll only drink cold Pediasure which is impossible to get at the hospital), the overnight bag, the camera bag and my purse. I think he also started the Jeep, but I'm not too sure. He then got in his Jeep; since I was staying at the hospital with Aiden and there was no way I wanted to drive home then back to the hospital.

Aiden and I got to the hospital at 9:30 where we had to check in at the volunteer/security desk. And we had to wait for a volunteer escort to go to admitting (yesterday's office which is 10 feet away) to wait for another volunteer escort to go to the 1st floor for pre-op waiting. I'm pretty sure I know how to navigate the hospital by now, but for whatever reason....... If I managed to get him to the hospital, I'm pretty sure that I'm not going to run away and avoid a cath lab. BTDT more than a dozen times.

In the waiting room, Aiden decided to make everyone in the room laugh. Apparently, his laugh is so cute, that no one can resist the urge to giggle with him. A little after 10:30, we got to go back to the private waiting room where his vitals were checked. Aiden then gets into his butt-less gown. After about 35 minutes, another nurse knocks on the door and announces that within 15 minutes, they will be ready for Aiden in the cath lab. So, Aiden's nurse walks out and returns with the goofy juice Versed. She tried to give it to him all at once, and Versed is nasty tasting, so Aiden prompty let her know what he thought of her shoving it down his throat. She then tried to get him to chase it with apple juice, which Aiden detests juice more than Pedialyte. He wouldn't chase it with Sprite either. Within 7 minutes the Versed had taken effect and Aiden was pretty much a wet noodle. Pre-op nurse is adament that Aiden will not remember anything. **coughbullsh#tcough** as Aiden remembers the AV Canal surgery.

Dr. Secondary Pediatric Cardiologist comes in and talks to us for a few minutes. He says that they (Dr. Pediatric Cardiologist is going to assist) are going to try to go through the groin area first (known as a femural arterial stick). Why? I'm not real sure as I'm thinking that the scarred veins from ECMO has not resolved itself, nor has it gotten any better.) But he does assure me that Dr. Cardio-throacic Surgeon is fully aware that he may be called for the cut-down. We also discuss the impending valve surgery and he is confident in Dr. Cardio-thoracic Surgeon's skills as he has 30+ years of experience. At 11:30, Dr. Secondary Pediatric Cardiologist's nurse comes into retrieve the wet noodle.

Chris and I went to move my Jeep from the BFE parking space, the only one available at the time we arrived. I managed to get the "Amen" parking spot located on the second level right in front of the "Prairie Dog" tunnel that leads to the basement entrance of the hospital. Which I love this spot because Aiden does not have to be subjected to the weather when we leave. We then went to a Mom & Pop diner for lunch. The echo takes 30 minutes and the cath lab usually about 45 minutes to an hour. So, we were thinking as we were returning, Aiden should be coming out of surgery.

We got back to the hospital and the volunteers in the family waiting room were gone. So, I picked up the phone to see how things were going. Aiden hadn't made it to recovery yet, so we waited. And waited. And waited. Seriously, we waited a really long time.

Dr. Secondary Pediatric Cardiologist's nurse finally calls and apologizes for the lack of updates. The femural arterial stick didn't work. So, they tried to do a superiour vena cava stick, but that didn't work either. A cut-down was necessary. They had to page Dr. Cardio-thoracic Surgeon a few times as he was in OR and wait for him to show up. Then Dr. Cardio-thoracic Surgeon wanted specific tools to do the cut-down. So a trip to the OR was needed. Apparently, they had to make several trips to the OR in order to make the cath lab a suitable OR. So, 2 and a half hours later, they were half way through the procedure.

Finally, Dr. Secondary Pediatric Cardiologist and Student Doctor Whoever come to the waiting room. And we discussed the cath lab. He shows me the pictures of Aiden's heart, from a few angles.The first was the left side of Aiden's heart, showing the mitral valve. And then the right side, showing the tricuspid valve and right ventricle. The little squiggly things are the wires holding Aiden's chest together from his first OHS. The thicker/darker wire is the cath wire. (See, told ya I got really cool pictures!)

And then he handed me the printout of the results. (Click on the picture for better reading)

The pulmonary hypertension has completely resolved itself. YAY!!!! The numbers with the % signs are the O2 saturation levels for each area of his heart. The hand drawing is the new option for fixing the stenosis of the tricuspid valve. Aiden's only option is no longer a Glenn shunt and placed on the transplant list. Now, they think that Aiden is a candidate for having his pulmonary artery blocked off and re-routed, meaning that his little heart won't have to work as hard since the right ventricle is still smaller than it should be, but according to Dr. Secondary Pediatric Cardiologist - it is getting bigger. If Aiden can have his plumbing re-routed, he may not have to have the second valve surgery. But it is still a surgery, just not one we are planning in the near future. Previously, this was not an option since Aiden did have pulmonary hyptertension.

Now for the mitral valve news. Yeah, it leaks A LOT! Dr. Cardio-thoracic Surgeon is already planning the surgery. The mitral valve does indeed have a cleft and his blood flow is regurgitating back into the left atria at a significant amount. Dr. Pediatric Cardiologist is pushing hard for this surgery as she feels the valve is what is keeping Aiden from being a chunk.

During all this, Dr. Pediatric Cardiologist was doing the sedated echo. We don't know the results, but the plan is to hold a surgical conference on Friday and give all the information and numbers to Dr. Cardio-thoracic Surgeon.

We waited about 10 more minutes before we were called back to recovery. The doctor who escorted us back said that Aiden was so not in a happy mood, but he was still a precious thing. Aiden is NEVER in a happy mood when he wakes up from a nap.

Aiden was PISSED!!! He didn't want anyone touching him, he didn't want blow-by oxygen. One of the nurses was trying to get him to drink glucose water with an orthodontic nipple, which Aiden absolutely detests. We switched out the nipples and he was about 2% happier.

The recovery nurse brought over two rocking chairs and we could finally get to hold Aiden.

Chris kept trying to get Aiden to smile and laugh, but he wouldn't. Since he kept down the glucose water, they let me give him some Pediasure. He drank the entire bottle and was more than 10% happy. We had to stay in recovery a little over an hour and a half before they moved us to the oncology floor. Aiden was somewhat happy to get to go for a ride, but he wasn't supposed to sit up, which pissed him off even more. By the time we got to the floor, he was screaming bloody murder.

The nurse said that if Aiden continued to drink and didn't start to bleed through either of the pressure bandages that we would be able to leave around 8:00pm, which was 5 hours after surgery. He drank another bottle of Pediasure, got a huge dose of Tylenol and slept. He was content with sleeping as long as Chris laid next to him.

One of the local churches brought in Build-a-Bear bears for all the kids in the hospital. I will have to remember to send them a "thank you" note. 

A little after 8 pm, the nurse brought his walking papers. Along with the cath follow up pages. I was thinking that we could remove the pressure bandages tomorrow, since we always remove the bandages the day after we come home. It just wasn't registering in my brain that we always stay the night, so removal would be 48 hours later.

So, 11 hours and 45 minutes later, we were home. Aiden was more than happy to be home. He was ready to play with his toys, but really couldn't do much since he isn't allowed to move his leg or neck. He has tried a few times to remove the pressure bandage from his neck as it is irritating him beyond belief. He doesn't like it and doesn't think it needs to be there anymore. He also is not liking the fact that he is double diapered due to the pressure bandage on his groin. The little boy is miserable. He has been snuggled up next to Chris since we got home tonight. He'll hug me and pat my back as if to say, "It's okay Mommy, I forgive you."

Photo and video editing at www.OneTrueMedia.com

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