Thursday, July 31, 2008

The Birthday Invitations are Mailed!!

Wal-Mart does not carry Winnie the Pooh party anything. Neither does Target. I could have went to Party America, but Aiden is past his 1 year birthday.

I ended up having to make the invitations. Seriously. Thank God for PrintShop. I found the cutest Pooh and Friends JPG for the cover.



Then, for the inside background, I went with a map of the Hundred Acre Woods.


Which the picture is a little too colourful for a background image, so I had to lighten the tint by 40%. And then I added the party information.

Aiden's 2nd Birthday
August 31, 2008
2pm

Hundred Acre Woods
(our real address)

The RSVP information

and the disclaimer
that this is a themed costume party


Did you know that Kristen ITC font looks just like the fonts used in Winnie the Pooh?

I wanted to do quarter fold cards; also not available at Wal-Mart. So I had to buy the half fold cards. Only, I out-smarted PrintShop and used the quarter fold card format. And since my pretty and newly made Pooh and Friends quarter fold invitations will not work in the half fold card envelopes supplied with the card stock, I bought quarter fold card sized envelopes.

Yes, I spent way more than I should have if Wal-Mart or Target carried Winnie the Pooh invitations, but I think mine are way cuter!

And in other Aiden news:

  • Aiden discovered that the kitchen cabinet doors open. This morning, I took my third trip to Wal-Mart this week for safety latches. (D'oh, I forgot shaving cartridges! Yeah, those will wait.) I have been to a Wal-Mart three days in a row for this little boy. THREE!!! Remember the school supply list from Tuesday? And the failure of Wal-Mart (well the Wal-Mart where we live) to carry fat handled paint brushes? Well, the next closest Wal-Mart has a crafts dept (which ours doesn't because it is a new Wal-Mart and the new Wal-Marts don't have a crafts dept) and they carry fat handled paint brushes.
  • Aiden made the signs for drink and eat yesterday. We went to IHOP for lunch.
  • Aiden got out of PT yesterday. I haven't told him that it is rescheduled for today.
  • One of Aiden's girlfriends at Wal-Mart gave him a balloon this morning. Helium filled balloons are entertaining for about 5 minutes.

Wednesday, July 30, 2008

Laura's Story

This is a newspaper article about one of the little girls in our local group, DSAT.



Thursday, July 24, 2008
Owasso girl with feeding disorder thrills parents with first bites

Article reprinted courtesy of Kennedy Krieger Institute

When Jeffery and Rebekah Fish found out that they were going to have a baby, they were understandably thrilled.

"Even before she was born, we sang to the baby," says Jeffery. "We named her ahead of time." They had big dreams for Laura, but they also wanted that most basic of things: a happy, healthy baby girl. That was not to be.

Because of complications with the pregnancy, doctors were forced to leap into action and induce labor early. Then they immediately sent Laura to a pediatric intensive care unit. While most mothers get a chance to hold and bond with their newborns, Rebekah got a Polaroid.

The doctors were able to save Laura, but her fight was far from over. She was diagnosed with Down syndrome, and she never learned the suck and swallow pattern necessary to eat - a seemingly simple thing that would impact the rest of her life.

Rebekah and Jeffery found it hard to believe that their daughter couldn't eat, something that seemed like it should come so naturally.

"We pulled the tube out," Jeffery recounts. "We said, 'let's leave it out.' We were just using common sense. You think, when she gets hungry, she'll eat." But it didn't work, so Jeffery and Rebekah began to look for answers. They traveled across the state and across the country to different feeding programs, with no success.

"We were at a standstill," says Rebekah. Then their search led them to the Kennedy Krieger Institute.

On November 13, 2006, Rebekah and Laura boarded a plane and flew from their home in Oklahoma to Baltimore to pursue what felt like their last hope. Since Laura was older and more medically complex, and because she had never eaten anything by mouth, the treatment team set a small goal for her: to complete a swallow study. There would be little more the team could do, if the study was not successful. Fortunately, it was, so Kennedy Krieger's experts went to work using a variety of evidence-based practices to help Laura.

First, they had to tackle some of her behavioral issues. Because of her aversion to eating, she would spit or refuse to let anything near her mouth. The therapists also faced some of Laura's physical challenges. Because of the low muscle tone caused by her Down syndrome, Laura had "tongue thrusting," which made it hard for her to eat.

Seven days later, Laura swallowed two bites on her own.

"It was like me eating an elephant," Jeffery says of the seemingly small feat. "She had never put anything down in her stomach from her mouth. And it just snowballed. Every feed they were getting more and more down her."

Rebekah, watching from an observation room, was beside herself as she saw Laura take those miraculous first few bites.

"I wanted to just go in there and hug her," she says.

Despite her progress, Laura's struggle wasn't over. There were still days when, in tears, she refused to eat, fighting the spoon away, but she continued to make gains.

Now Laura is eating more and more on her own. Although she's not quite ready to eat an elephant, her mom is happy to indulge Laura's latest craving - soft-serve ice cream.

About the Kennedy Krieger Institute

Kennedy Krieger Institute is an internationally recognized facility located in Baltimore, Md., dedicated to improving the lives of children and adolescents with pediatric developmental disabilities through patient care, special education, research and professional training.


The Safe Way to Play With the Hound



For more Wordless Wednesday, click here and here and here

Tuesday, July 29, 2008

A Letter to Aiden

My Dearest Aiden,

Why do you insist on waking up before the crack of dawn? 5:30am IS NOT an appropriate time to get up, ever. I promise it is okay to sleep until 6:30, though 7:00 - 7:30am would be even better. School is out until August 20th, take advantage of this precious time.

When Mommy is in the shower, it is not necessary to come into the bathroom and slam the doors. Mommy has a heart attack and can not see very well with shampoo in her eyes and her glasses laying on the bathroom sink.

I am proud that you are learning to dress/undress yourself. However once the SureSteps and shoes are on, leave them on. Mommy will take them off individually. You do not need to remove the SureSteps while they are still in the shoes.

While we are driving down the highway, now is not the best time to have a meltdown for a bottle of Pediasure. I promise, it is not feasible or safe to stop in the middle of the Broken Arrow Expressway (Highway 51 for those not in the area) during lunch time traffic and it is impossible to get to an exit.

Speaking of bottles, please do not remove the nipple from the bottle while you are drinking it. It makes a huge mess down the front of your shirt.

Please do not unplug the vacuum while Mommy is trying to use it.

You are too young to eat the samples handed out in the grocery store. Don't ask.

Yes, the bumper pad around your crib has been removed. It is meant for you not to bump your head on the rails; not for you to put your head under it.

We are so proud of your new words: "ball" and "fun"!!! Now just say "Momma" more.

You are all set for the new school year. Almost all of your school supplies (except for the big handled paint brushes) are bought. It is a good thing we don't pay tuition, your school supplies are expensive enough - $150 worth! Though I'm still not sure why you need some of them.


Aiden's school supply list includes the following:


  1. multi pack of paper towels
  2. 2 boxes (100 count) latex-free disposable gloves
  3. 1 box of Kleenex
  4. 2 rolls of 35mm film (24 exposure)
  5. 2 packs of Polaroid film
  6. 1 package of batteries (D, AAA, or 9 volt)
  7. cookies or crackers for class snack
  8. Juice
  9. 1 package of glue sticks
  10. 1 package of tall kitchen trash bags
  11. 2 boxes of diaper wipes
  12. 2 small bottles of school glue
  13. construction paper
  14. 4 sheets of poster board, any colour
  15. 1 can of shaving cream
  16. Washable Crayola Tempera paint
  17. large handled paint brushes
  18. hand sanitizer
  19. packing tape with serrated cutting edge
  20. Goo Gone
  21. Air freshener
  22. Velcro - heavy duty


Tomorrow Karrie will be here for PT. You do not need to stop doing all the things she wants you to do when she gets here. That is when you should be doing it.

With my sincerest love,
Mommy

P.S. Pooh Bear may not have been the best idea for your birthday party. Wal-Mart does not carry Pooh Bear party supplies. So now Mommy must try other places.


Sunday, July 27, 2008

More Alike Than Different Awareness

Have you seen the new commercial spots for the More Alike Than Different campaign? If not click here

National Down Syndrome Parent Survey

Dear Parents and Caregivers,

You are invited to participate in a study conducted by researchers at the National Institutes of Health and the Johns Hopkins University.

*Why is this study being done?*
To learn more about how caregivers adjust to having a child with Down syndrome (DS). We are interested in hearing from caregivers who may be learning to adjust and also from caregivers who feel well-adjusted.

*Who can take part in this study?*
You must be 18 years of age or older and must be the primary caregiver for a child with DS. Please fill out only one survey per household.

*What is involved in this study?*
There is one survey that takes approximately 20-30 minutes to complete. It asks about your thoughts and feelings about your experience as a caregiver to your child.

*What are the risks of the study?*
There are no known risks of taking part in this study. If taking the survey makes you feel upset, you can stop taking the survey at any time. If it causes you to become upset or worried about yourself or your child, you can also contact the researchers (see below) and they will help direct you to the appropriate resources.

*Are there benefits to taking part in the study?*
You will not personally receive any benefits from taking part in this study. We hope to learn more about how caregivers adjust to having a child with DS and pass that understanding on to help caregivers in the future.

*Do I have to participate?*
No, you do not have to take part in this study if you do not want to. Your decision to take the survey will not have an affect on your child’s healthcare. If you begin the survey, you can choose to skip any question that you don’t want to answer. You can also stop taking the survey at any time. If you finish the survey and then change your mind, we will not be able to delete it since the surveys are all anonymous.

*Who else will know that I am in the study?*
We do not ask for your name or contact information on this survey. If you provide us with your name by calling or writing to us, we will not link your name with your responses. This study will not be part of any medical record. When we report our research results, it will be done with no identifiable information from individual participants.

*How do I participate?*
The survey can be found online here. If you prefer to complete a paper version of the survey, please contact Megan Truitt at (301) 443-2595 or through email to receive the survey and a pre-addressed and stamped return envelope. Any contact information you give to the researchers in order to mail the survey will be immediately destroyed after it is mailed. Also, if you are more comfortable completing the survey over the phone, please contact Megan Truitt (see contact information below) to arrange a time to do so.

Thank you for your interest and time! If you are taking this survey online, please print a copy of this consent form so that you have the researchers’ contact information.

Also, after the study is complete, we plan on giving out a short summary of the results through the recruitment sources as a way of saying thanks for participating. If interested, please check the Kennedy Krieger Institute website for the study summary.

Megan Truitt
Associate Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 443-2595
mtruitt@mail.nih.gov

Barbara Biesecker
Primary Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 496-3979
barbarab@mail.nih.gov


My Private Rooms

Hello, my name is Lori Turbenson. A young lady with Down Syndrome. I was born in Mercy Hospital on March 26, in 1980. I arrived at 7:02 P.M. I was in my mother’s arms, sleeping. I was baptized in the hospital when I had spinal meningitis.

I started school when I was two years old. I went to many different schools, but I remember all my teachers. This year I’m going into 11th grade and I’m going to be a Junior. I always love school.

When I am not in school there are some things that I like to do. I like music and I have taken voice lessons because I want to sing in tune. I also take piano lessons and I like to play for people. Some other things I like to do are cooking, memorizing, gymnastics, dancing, singing with songs on my CD, going to camp in the summer, and swimming.

I live with my family. My parents have been married about 25 years. My dad is a director in American Express, and my mom is an ESL teacher. I have one sister and she is 18 years old. She is going to college next year, so she’s running away from her family. I have one brother and he is 12 years old. We don’t always get along and sometimes we argue.

I like my friends with Down Syndrome and I like my other friends with disabilities and abilities. I like my cousins because they’re nice, and one of my cousins is funny.

I also have a love life. I have boyfriends. They are major cute.

Every night I go to my dreamland to see what it’s like to be a parent with Down Syndrome. I wish I would be that parent.

I memorize well. My brain is called a “computer device,” and my head is called the “computer memorizing machine.” And it’s really private and I love it!


My Room*

My room is my favorite place to be. Because I live in it. It’s the reason why I pick my room for my favorite, because I get more space. And it’s also private. My room is my privacy house where I sing, where I write, where I have privacy space to sleep, where I keep peace, where I invite my friend, where I make private friend clubs, where I have faith in God.


My Head

I memorize a lot! One thing that I memorize is cartoon characters. The characters that I memorize are in my head. I have two computer disks. One computer disk is in my right ear and another computer disk is in my brain. The computer screen is my head. The computer keys are on my forehead. The computer printer is my left ear, and my coming-out printer is my mouth.


My Head (part 2)

My head is very good to wear, and it has a great personality all its own. I memorize with it. My head memorizes a lot! It memorizes actors and singers. My head has a computer, and it’s called “Private Computer.”

I think it’s great to have a head.


My Memory

I think I have a good memory.

It’s called “Private Memory Machine” with a memorizing device that tells me what to write about, like

singers
actors
my parents
my Life
my private life
my room
me
my feelings
my family
and many more things.


Wednesday, July 23, 2008

Tuesday, July 22, 2008

Holter Monitor Results

Well, my cell phone rang today. It's Tracy from Dr. Pediatric Cardiologist's office. The results of Aiden's last Holter monitor are back.

In the 24 hour period that he was wearing it, there were only a few early beats, which is good. So translation - no unscheduled appointments with Dr. Pediatric Cardiologist or Dr. Pediatric Electro-physiologist. Whooo-Hooooo!

And in other Aiden news:

  • He slept in today! OMG, an 8 am wake-up!!!! I don't know when the last time I got to sleep in like that. However, not even 30 minutes after waking up, we experienced a blow out of epic proportions. The poop was up his back and down his leg. Thanks to Dr. Developmental Pediatrician who suggested Miralax. Sending lots of love your way... NOT!

  • Aiden is also working on toofer #8, his other front tooth.

  • I'm "thought designing" a new layout for Aiden's bedroom. I made Chris move out the "male bonding equipment" (the weight bench) and there is a lot of open space. I definitely want to put Aiden's Snoopy table and chairs in - which will not match the Hundred Acre Woods mural painted on the walls. Chris had not realized how many clothes Aiden has. I informed Chris that Aiden still has clothes located in the totes (yes, plural) out in the garage (winter clothes, though. And I do recycle clothing.) Honestly, we need to build another closet and add a chest of drawers.

  • The birthday cake is ordered. Aiden had a hard time deciding which cake theme he wanted. We went with Pooh Bear. So, we will have a Hundred Acres Woods party. And it gives me an excuse to make Aiden wear his MiniLaps costume. So, all his little friends who are invited have to dress up as some sort of Pooh character. I need to get the invitations made up and sent out.

  • Took Aiden grocery shopping today. Yeah, that was fun. He did good for about 5 minutes. Then the "atti-two-de" came out. He wanted held. He didn't want held. He kept pushing us away. He wanted played with. He didn't want played with. Went to the deli and got him some potato wedges, which partially eaten (and he manages to get back into the bag) look disgusting. Aiden decides to let out the biggest belch he could muster and smile. *He is proud of himself for being such a boy.*

  • After we left Wal-Mart and got on the highway, Aiden immediately fell asleep in his recliner car seat. Chris wanted to go eat Chinese, but Aiden was sleeping. So we come home, unload the groceries, and gently place Aiden in his bed. And he took a pretty good nap. All things were quiet. UNTIL Aiden wakes up. The boy seriously has a hard time gaining consciousness following a nap. The whining must begin. He promptly received a bottle and a diaper change.

Monday, July 21, 2008

A Broken Heart, A Whole Heart

Today, I attended a funeral for a 3 month old girl in our Mended Little Hearts of Tulsa group. Emma passed away last Wednesday from a cardiac arrest. Emma was born with a broken heart also, HLHS or hypoplastic left heart syndrome.

Aiden was not supposed to survive his heart surgery; his odds weren't great, they were not even good. In fact, they were terrible. Emma on the other hand looked really good following her first surgery in the series of three. She didn't have all the "battle wounds" that Aiden has. And Aiden has A LOT of scars. I swear you can play connect the dots.

The service was beautiful though. And I held up really good until Mom, Sonya, got up to read a letter that she and Dad, Brian, had wrote to Emma. In the letter, she talked about the last few minutes of Emma's life. The service ended with a slideshow of pictures of Emma and her family.

It is times like this that make me wonder why Aiden survived and yet others don't.

Sunday, July 20, 2008

Down Syndrome: An "Abnormal" Pity or Blessing?

The people first language in this piece is atrocious, but it is an interesting article:

“God has a plan for everything,” people say. But does He really? People often question the existence of good plans that God supposedly has behind everything that happens in this world, especially the bad happenings. Down Syndrome, a scientifically-proven syndrome that is used to refer to the mental retardation caused by an extra chromosome in a human cell’s development stage, is often perceived as a catastrophe upon the person acquiring it. In the same manner, people often question the existence of God’s plan behind having children with Down Syndrome in this world.

I believe the answer to the above question is an unequivocal “yes”. People with Down Syndrome are God’s creation, for which God has good plans for. However, the consequences of our actions towards people with Down Syndrome often prevent these paradoxical yet beautiful plans to be apparent in our lives. In Psalms 139:13 and Ecclesiastes 11:5, we are miraculously created by God in our mothers’ wombs, and in Genesis 1:27, all humans are created in God’s image. People with Down Syndrome do not choose to be born having this syndrome, but rather the chemistry of the chromosomes happened in the womb, long before the fetus was formed. For more information, click here. From creation, people with Down syndrome are not less human than “normal” humans, as many people unintentionally assume. This underlying, almost unconscious assumption towards people with Down Syndrome, often is what triggers the actions and perceptions that “normal” people convey to Down Syndrome people, consequently limiting the revelation of God’s plan through them.

Some misconceptions that “normal” people have towards people with Down Syndrome not only evolves around seeing them as lower than “normal” humans, but also the generalization that all Down Syndrome people are violent and will harm people when given the chance to. In strongly superstitious cultures, people often view Down Syndrome as a curse to families. If all cultures were to buy into these misconceptions, it would be no wonder if we almost never see Down Syndrome people in the public arenas.

Indonesia is one example of a culture as I described above. Down Syndrome people are seldom seen in the malls, cafes, movie theaters, grocery stores, markets, theme parks and other places where “normal” people gathers. The few places where we’d likely to find Down Syndrome people are hospitals, special schools for disabled students, restaurants and their parents’ homes. Furthermore, when we do find Down Syndrome people in some places, we mostly find them passively, rather than actively functioning. I do not recall finding a Down Syndrome person bagging groceries, cleaning tables in restaurants or working other simple jobs in Indonesia, as I sometimes witness in the United States. What I do recall finding very often in Indonesia is Down Syndrome people being accompanied by their helpers in public arenas eating, undergoing therapy treatments, or just simply staying at home most of their lives, not getting much opportunities to go out and experience the world. I cannot find a better reason for these observable facts than the misconceptions that people have, which in turn induce incentives to “hide” Down Syndrome people.

I experienced a turning point in my life where all the misconceptions that I previously had towards Down Syndrome people crumbled down. I have the privilege and honor of knowing a lovely boy who is diagnosed with Down Syndrome. Through him, I was humbled to realize that he has brought so much blessings to his surroundings by simply being himself. Witnessing the blessings that this boy alone brings, I am very much touched to share some of the hidden beauties that I found being in close encounter with God’s special and unique creation, a Down Syndrome person.

Being around this boy makes me realize and be grateful to God that I am so blessed to have a brain that functions well, that can take in incredibly complex information and digest it to my understanding. While Down Syndrome people have defective brain developments, my brain capacity enables me to pursue higher education and learn professional skills that not many people can acquire. And while the overall learning potential of Down Syndrome people deteriorates very quickly as they age, my learning potential grows as I age, at least until close to retirement age.

This lovely boy has also displayed a joy so pure that I seldom find in contemporary busy people’s faces. Despite his occasional tantrum throwing, this boy just displays a peace that comes from within. While most of us are very concerned with what other people think of us, this boy do not understand what it means to not fit in the society. While “normal” people often perceive him as being weird, sometimes to the extent that they make disgusted or shocked expressions when seeing him, he could not be happier, not having the “weird” word in his dictionary. Sometimes when I was lucky enough to meet him, when I am feeling stressful, I like to just watch him while he is joyfully playing with his toys or when he is just peacefully sleeping and enjoy that pureness from him. I envy his gift of ability to be so pure in the midst of such a crazy and cruel world.

In a fast-paced world that waits for no one, how often do we get so excited that we just want to proclaim to everyone, the simple fact that a five-year-old boy just learns to locate the “backspace” button on a keyboard? We all know that this does not happen often. Rather, almost in an unconscious manner, we underestimate such simple skill and seldom give thanks for our acquisition of those skills. However, being around a Down Syndrome child makes me appreciate this simple skill as a spectacular improvement that can only comes from God. Each time this boy acquires a new set of skills, such as speaking his first word at the age of three, putting marbles into a bottle at the age of four, or pronouncing words clearly at the age of five, I was reminded again and again how our marvelous God miraculously made us able to learn skills for life in His time, yet we sometimes arrogantly take this gift for granted.

Appreciation of these simple skills comes hand-in-hand with acceptance of what God provides for this boy. Every improvement counts exponentially and comes with great thanksgiving. People seldom expect much from Down Syndrome people due to their mental or physical disabilities. Since the mysterious complications of Down Syndrome happened unseen in the womb, people tend to feel that developing the “underdeveloped” being are out of their control. This feeling leads many people to rely more on God as the controller in this situation when they want to feel hopeful, yet they are hopeless. I am reminded of Paul and what God said to him in 2 Corinthians 12:9-10, 9But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 10That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. This is the attitude that we should have when we feel out of control, that we should not give up hope and should persevere in developing Down Syndrome people.

These blessings which I described above are what I call the hidden beauties. Why are they hidden? Down Syndrome people are very much dependent on others in their surroundings. As we make decisions for Down Syndrome people, our actions will affect them whether we realize it or not. Many people feel ashamed having them, view them as abnormal beings and avoid exposing them to the public. For various justifications on our part, their world is very limited currently, especially in a country like Indonesia. After understanding the blessings that Down Syndrome people can bring to their surroundings, I see no reason why we should hide them from being seen in public arenas. It is like a endless cycle-preventing Down Syndrome people to socialize in public arenas leads to lesser awareness of what they can do and the blessing that they can bring to the surroundings, which then leads to lesser appreciation of Down Syndrome people. Ultimately, this leads to more hesitancy to expose Down Syndrome people, bringing us back to the beginning of the cycle. No where in the cycle do I see an opportunity for Down Syndrome people to fairly experience the world as we experience it, unless the initial point of the cycle is cracked. How would God’s plan be revealed through them if we choose to let this cycle continues?

It is my wish that through my sharing of the blessings a Down Syndrome child has provided me, we can spread their blessings through our actions by not limiting their life spaces and assisting them in fulfilling what God has planned for them. I am very much looking forward to discerning what God has planned further down the years for this boy who is very dear to my heart. I imagine the day when I witness this boy fulfill what God has for him will be a day full of joyful tears - a day of hope and thanksgiving.


Elis Markova has recently graduated with a B.B.A from the University of Wisconsin-Madison and is currently pursuing a Masters of Accountancy degree at the same university.

References:

Psalm 139:13. For you created my inmost being; you knit me together in my mother's womb.

Ecclesiastes 11:5. As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things.

Genesis 1:27. So God created man in his own image, in the image of God he created him; male and female he created them.


Saturday, July 19, 2008

Aiden and the Bulls

Last night, Chris and I took Aiden to the PBR. If you have never been to a PBR event or watched one on television, it is a bunch of grown men strapping themselves on the back of a pissed off bull and trying to hang on for 8 seconds.

These bulls are bred to be mean. They don't want anyone on their backs as much as you or I want anyone strapping themselves to our backs and then sticking spurs into our sides.



Quite a few of the riders don't make it past 2 seconds, if that long. Several of them get stomped in the face or get their necks broken. A few have died doing this.

Aiden could have cared less about the bulls or the big truck shooting confetti out of it. He loved the music and he danced. Every other minute he wanted to dance with Chris, then he wanted to dance with me. He flirted with the ladies sitting behind us. He flirted with the ladies sitting in the next section. After the event, every one in two sections had to come up and meet the "cute little guy" who was more entertaining than the bulls were.

Thursday, July 17, 2008

Aiden and The Warden

Aiden had an appointment with Dr. Pediatric Cardiologist yesterday. By the time we had gotten there from school (2.5 miles), Aiden had fallen asleep from a busy day. Have you ever tried to sign in holding a sleeping child? This is next to impossible. Donna, the receptionist, took Aiden and cuddled him until he woke up. They went to see if the echo tech was ready for Aiden.

A new nurse comes to the lobby to get me. Well, I really don't know if she is new, but I've not had the pleasure of meeting her yet. We went back and found Aiden flirting with Donna and the echo tech. (Not Brian, he was already gone for the day.) Aiden is weighed and we are then in the echo lab. Aiden loves the echo lab. It has a computer and wires. And Aiden wants to help give himself an echo. So, toys are also involved. Lots of toys.

Then we go to the other side of the office, to the exam room. Maria comes in and does Aiden's EKG. There were no runs over 90 and no runs under 80. This is good. Tracy comes in to get Aiden's blood pressure, SATS, and length. Aiden takes this opportunity to show off his ability to do the splits.

Dr. Pediatric Cardiologist comes in and says we are going on a road trip. TO WHERE?!! Keep in mind that Dr. Pediatric Cardiologist's office is on the same campus as the Children's Hospital. Within walking distance close. I know the super secret passage way to get from the dr office to the hospital. You know the one that they say doesn't exist. Nope, we have to go back to the echo lab because none of the echo techs EVER get the gradients of Aiden's tricuspid valve.

Aiden has already had one echo and doesn't think that he needs another one. And he fights it.

Back in the exam room: the "S" word is mentioned. To a mom who has endured one of the ugliest open heart surgeries, "surgery" is a four letter word. Aiden's mitral valve is still leaking. It has always leaked, we know this. Dr. Pediatric Cardiologist has been waiting and putting it off until Aiden has gained enough weight to undergo another surgery. One that isn't pretty at all.

What are the things that state valve surgery is required:

  1. enlargement of the left side of the heart (Aiden doesn't have this)
  2. a spike in pulmonary hypertension levels or elevated levels (Aiden doesn't have this either)
  3. poor weight gain. (Aiden does have this. But we're not sure if it is because of his valves or the fact that he was on a fat free diet for 16 months)

Any valve surgery isn't good. Be it repair (if we are lucky, which we are not) or replacement. I know of lots of kids who have went in for valve surgery; I don't know of many that came out. Dr. Pediatric Cardiologist hasn't said sooner rather than later yet. The last time she said that, sooner was a lot sooner than I was ready for.

And she is anticipating Aiden and I travelling to St. Louis for this surgery. I don't like the St. Louis hospital. I know what happens there. TRANSPLANTS!! We nearly ended up there once already.

Now you may be asking yourself "Why doesn't Dr. Pediatric Cardiothoracic Surgeon do the valve repair work?" There is a very simple explanation for this. HE MOVED TO SAN DIEGO! And Dr. Pediatric Cardiologist didn't think that Dr. Pediatric Cardiothoracic surgeon would even want to do something this tricky following the events of Aiden's heart repair surgery. And we don't know if the new cardiothoracic surgeon would be willing to take Aiden's heart on as a patient.

Speaking of the new Dr. Pediatric Cardiothoracic Surgeon, if anyone reading this is familiar with Dr. Hisashi Nikaidoh of Children's Hospital in Dallas, I would love to hear from you.

Aiden is also sporting the ever stylish Holter monitor again. I wasn't planning on going to Tulsa today, but I guess I have to now. I also have to take Grandma Susan a software disc and drop some jeans off at the dry cleaners to be starched. (Chris got tickets to the PBR (bull riding competition) and no self respecting person goes to a redneck event without starched jeans. Hopefully, they get the correct amount of heaviness for me.)

The good news from Dr. Pediatric Cardiologist is that Aiden is now free to fly. Meaning..... we now get to go to the Down syndrome conferences!!!

Tuesday, July 15, 2008

Special Needs Cheer Team

Michelle Adams is a mother of a child with special needs. She was at a cheer competition with her daughter (who doesn’t have special needs) and during this competition a cheer squad came out to perform and they were a special needs squad. She said her heart melted, the crowd went wild and she knew she had to start this in Tulsa. She has done some research and there are 60+ special needs squads in the US. They are even starting to have their own cheer competitions.

She has talked with SSB Kids gym (in BA) which houses the Tulsa Cheer Academy (TCA). They share her mission and would like to try and start a cheer squad for kids with special needs. Ages – 5 and up. They would be officially part of TCA, wear TCA uniforms like all the other squads, compete in competitions, etc. Practices will be on Friday’s from 6:15 – 7:15 pm at SSB Kids Gym.

There is going to be an informational meeting on Tuesday, July 29th at 7:30 pm.

For more information see the attached flier and/or contact Michelle Adams


Tulsa Cheer Academy
Shining Stars
SPECIAL ATHLETES CHEER LEADING PROGRAM


TCA is one of the first to offer special needs cheer leading in our area! TCA Shining Stars cheer team is a competitive cheer squad for special needs athletes ages 5 and up. Competitive cheer leading builds coordination, self-confidence, and discipline. There will be trained adult coaches as well as junior coaches, who are also TCA cheerleaders, working with your child. The junior coaches will be on the floor with the Shining Stars during their all-star competitions to assist where needed.

*What kind of commitment is involved in joining the team?
Team members will practice on Fridays from 6:15-7:15 starting August 1st. There will be approximately 4 competitions the team will compete in. (Most will be local) More information will be given at the parent meeting. The cost is $120 for uniform rental and bloomers and $45.00 per month for tuition (4 week session). There will be competition fees that will be addressed at the parent meeting.

*Does everyone “make” the team?
You bet! Everyone can succeed at cheer leading. We will have athletes with many different disabilities. All will be able to participate at their own level!

*What if my special needs athlete can’t tumble?
We will work with each athlete to develop their own level of cheer and tumbling skills. All we ask is a willingness to learn, follow directions, have a positive attitude, and maintain good attendance.
If you are interested in having your child be a part of this program, there will be a parent meeting on Tuesday, July 29th at 7:30pm. Athletes do not need to be present.

SSB KIDS
1700 North Redbud Place
Broken Arrow, OK 74012
258-KIDS


Little Light House Orange Class Picnic

Today, Aiden's class had their annual class picnic. Due to the temperature outside, we held the picnic inside though.

All the kids wore their class shirts or onsies. Miss Kate tie-dyed them orange to represent the class colour. (Instead of grades, they have colours. Aiden is in the orange class.)

Chris and I took McDonald's for Aiden to eat. Aiden had a Happy Meal and Chris and I got shorted on our meal's fries. I swear McDonald's can mess up anything.

But here are the pictures from today. Andrew was the only one not present today and we missed him.



Owen is going to grow up to be a comedian, he is so funny! He stood in the middle of the classroom and made the silliest of faces. Caleb danced for everyone. Aiden has sinus drainage, so after he ate he didn't feel too well and he came home early. He did manage to fall asleep in the Jeep on the way home and stayed asleep for almost two hours.

Tomorrow is officially the last day of school for this year. And Aiden has to miss the last hour; he has to go to Dr. Cardiologist's office for a visit with Brian, the echo tech, and Dr. Cardiologist. School starts back up on August 20th and Aiden will be in the orange class again with Owen, Audrey, Bethany, and Alyx. Alyx is one of our DSAT friends and she is one month older than Aiden. This will be her first year at the LLH.

Monday, July 14, 2008

St. Louis Area Mommies

Are any of you in the St. Louis area? If so, could you please email me regarding a very important matter to me?

My Little Calendar Boy

Aiden's 2009 DSAT Calendar photos are ready for viewing. Just click here and enter event code 67024wdsat2. You will have to enter your email information to view the photos. Aiden is on pages 2,3 and 4.

The little guy in the tux is Caleb and the little red headed guy (who looks a lot like Aiden's friend Rhett) is Owen. They are in Aiden's class at school.

Saturday, July 12, 2008

Some Thoughts on Advocacy and Being Politically Correct

You may have noticed on the bottom of this page that I am a member of Raising Children with Down syndrome on CafeMom.

There was a post earlier this week that has brought to the light how hurtful words can be. The post mentions a picture of a tiger who appears to have Down syndrome. The picture appeared on the Internet last year.


Scientifically speaking, the picture is a fake. Tigers have 19 chromosomes for a total of 38. It is not physically possible for a tiger to have T21 as there is no 21st chromosome.

Under the original posting of the picture, read something like this.. "....people with down syndrome should be taken to an island & killed. They are a financial drain on society & money could be used to feed the hungry or help the homeless."

The person who responded in this way is stupid. He/she is not an ignorant person.

Yes, there is a difference between ignorance and stupidity. Frankly speaking, ignorance can be taught; stupidity can not.

Now, should Fran, the person who posted this on the CafeMom group have been offended by the comment? Oh, absolutely! It is offensive. The offending person obviously has never met anyone with Down syndrome. Unfortunately, society is full of people who have never met a person with Down syndrome. While comments like this are rare, they do occur. And the belief is still there that our children will be a drain on society. Even as we sit here today, with the advances in medical research, the general population of the world still think of people with Down syndrome to be useless, mindless beings.

Less than 70 years ago, children with Down syndrome were put into death camps. We have all heard of the term "euthanasia" or mercy killings. But do you know how it started? A couple in Germany who had a child with Down syndrome wrote Hitler a letter asking that he order the death of their child. The idea was a good one according to Hitler and Aktion T4 was born. This is stupidity

Action T4 (German: Aktion T4) was a program in Nazi Germany, officially between 1939 and 1941, during which the regime of Adolf Hitler systematically killed between 200,000 to 250,000 people with intellectual or physical disabilities. The Nazi regime began to implement "racial hygienist" policies as soon as it came to power. The July 1933 "Law for the Prevention of Hereditary Diseased Offspring" prescribed compulsory sterilisation for people with a range of conditions thought to be hereditary such as schizophrenia, epilepsy, Huntington's chorea and "imbecility". Sterilisation was also mandated for chronic alcoholism and other forms of social deviance. This law was administered by the Interior Ministry under Wilhelm Frick through special Hereditary Health Courts (Erbgesundheitsgerichte), which examined the inmates of nursing homes, asylums, prisons, aged care homes and special schools to select those to be sterilised. This is stupidity

This precedent was used to establish a program of killing children with severe disabilities from which the guardian consent element soon disappeared. From August the Interior Ministry required doctors and midwives to report all cases of newborns with severe disabilities. Those to be killed were "all children under three years of age in whom any of the following 'serious hereditary diseases' were 'suspected': idiocy and mongolism (especially when associated with blindness and deafness); microcephaly; hydrocephaly; malformations of all kinds, especially of limbs, head, and spinal column; and paralysis, including spastic conditions. The reports were assessed by a panel of medical experts, of whom three were required to give their approval before a child could be killed. This is stupidity

And then, what, 20 years ago, children with Down syndrome were being placed in institutions. I'm not talking group settings. I'm talking asylum settings, where the children were strapped down in cribs, no interaction what-so-ever. This is ignorance, we now know better

Today, children in Russia who have Down syndrome are not even treated as humans. They do not go out during the day due to the ridicule that they receive. They are not allowed medical care. For those with heart issues, they are simply left to die. The majority of children are placed into orphanages (see the description of institutions) and forgotten about. Yes, many do die by the time they are 5. They do not have a right to an education. There is one school in the entire country of Russia dedicated to educating children with Down syndrome. And they run on very very limited income as the Russian government will not spend one cent to educate these kids. This started out as stupidity, but throughout time, has started to see the light of ignorance

No, stupidity can not learn, they can not be taught. However, for those few feeble minds who are the truly ignorant ones, we must advocate. We, as parents, must educate. Not so that they will be "politically correct", but to be decent to one another.

Now, there are several ways we can choose to advocate. And how we advocate makes a huge difference.

There are those who choose the "militant mom" way of advocacy. These are the moms who yell, scream, and bring a lot of attention to a cause by shoving issues down the throats of everyone. But keep in mind, there are other "militant" groups out there. What benefits have these groups brought to their cause? Think of the group "God Hates Fags", you know the preacher who said that Matthew Shepherd is in hell because he was gay? The preacher who pickets the funerals of fallen soldiers because God hates America so much? Does this shed a positive light on him or his cause?

The louder you scream means that people hear you, but are they listening? More than likely not. We are all guilty of looking at people doing the same thing and thinking "What a nut!" Admit it.

Then there are those who chose to advocate quietly. These are the moms who really don't say anything unless they HAVE to. Do people hear the message? Not a lot, but they do listen.

Is there a mid-ground? I believe so. The way I choose to advocate is to be proud of Aiden, regardless of his shortcomings. No, I don't say "Aiden has Down syndrome, so deal with it." I can't force anyone to accept Aiden because he has Down syndrome. That isn't why I advocate. I don't advocate for Down syndrome, I advocate for Aiden in spite of having Down syndrome. I keep things in perspective to Aiden.

Aiden is a child first. Then Aiden is a heart patient. Thirdly, Aiden happens to have Down syndrome. His heart issues take up a lot more of my time than his Down syndrome issues. And that is why I advocate. To educate that children with Down syndrome are CHILDREN FIRST! Once someone (anyone) gets that they are children first, most don't even see the syndrome.

Am I going to change the world? I highly doubt it. But have I made a difference in just one person's way of thinking? You betcha. So, yes I have done my job as an advocate for Aiden. Because of Aiden, lots of people who used to say "retarded" instead of "goofy" or "stupid" no longer do. Because of Aiden, a few people no longer use the term "mongoloid" to describe a person with Down syndrome.

Full acceptance of Down syndrome isn't going to come overnight. Change doesn't work that way. It took over 100 years for African Americans to achieve change. While we have come a long way in the past 40 years, we still have a long way to go. And that is really all it has been ladies, 40 years.

We do need to develop a "thicker skin" when it comes to the things we are going to hear. We have to pick and choose our battles. Yes, people are going to say things that hurt and sting. But that is nature of the beast.

Friday, July 11, 2008

Those Eyes

Aiden had an appointment with Dr. Pediatric Opthamologist today. First thing this morning.

Aiden woke up shortly before 7am, when I had to dilate his eyes. In order to dilate Aiden's eyes, I must lay Aiden on the floor, straddle Aiden to hold his arms/hands down with my legs, use one hand to hold open the eye and the other hand to quickly squeeze one drop of dilating solution into his eye.

And since it is summer, the sun is shining at 7:15, by the time we must leave and Aiden's eyes are dilated. Aiden also refuses to wear his sunglasses.

When we got to the office, Aiden played with the Duplo blocks and mastered putting them in the big yellow container. This is good, Aiden can now pick up his own toys when he is finished playing with them....

We get back into the exam room and the nurse comments on how blue Aiden's eyes must be because by this time, his eyes are big black circles. She manages to piss Aiden off trying to get him to track an infant toy, one of which we have, but Aiden refuses to play with as it is for "babies". And she keeps trying to grab his head to hold it still.

Then Dr. Pediatric Opthamologist comes in with Student Dr. So-and-So. Again, more of the head grabbing. Aiden hates for his head to be touched...

We discuss the clogged tear duct issue. Aiden is cleared to go under as long as it is at the same hospital that Dr. Cardiologist has privileges and the cardiac anesthesiologist does the "going under". But, he'll leave the decision to me. With Aiden's heart issues, going under even for minor surgery is a big deal. The tear duct probing is a simple 12 minute procedure. However, we're going to wait another year to see if the tear duct clogging resolves itself.

Also, 6 months ago, Aiden was far-sighted. This time, he's near-sighted. Well, no biggie. Everyone in my family happens to be near-sighted. So, Aiden will be eventually be getting glasses. Hopefully, I'll be able to get him a pair from Specs 4Us and the frames will fit him.

Thursday, July 10, 2008

Baby Needs a New Pair of Shoes

It seems that Nikes are not meant for SureSteps, at least not Aiden's Nikes. They just are not wide enough. One would basically need tools to slip them on over the SureSteps.

So, this morning, I woke Chelsea up to take me to Tulsa to pick Chris's Jeep up from the mechanic's. The mechanic charged $20 less than the Jeep dealership to replace a fan relay switch. Then we headed to the mall for shoe shopping.

FootLocker does not carry children's shoes. So, we went to StrideRite. There Aiden's feet were measured. Now normally, one side of your body is smaller than the other side, but I wouldn't think by that much, still in the same size range, right? Aiden's right foot measured a 3W and his left foot measured a 2.5W. So we went with a pair of "Cruisers" in a size 3W and he still has some growing room. $40 spent at StrideRite.


Hmmm, Mommy wonders what type of deals she can find at JCPenny. Bad, BAD move!!! Aiden is also the proud owner of a pair of KSwiss tennis shoes. But they were marked $14.99. And you got to take an additional 20% off of the pink sticker price. $13 for a pair of KSwiss.

Then Mommy went to her second favourite store, VS. Buy anything from the "Pink" collection, get a free tote bag; while supplies last. Mommy ended up with 2 pair of "Pink" flip flops and a free tote bag.

Okay, so time to leave. At the entrance/exit to the mall is Mommy's favourite store, Eskimo Joe's. Mommy is known as a "Frequent Smiler" at Eskimo Joe's. She has a card. Whenever she shops there, the girl at the counter scans the card and adds "points" to Mommy's account. Points = free stuff. Aiden got a new t-shirt

And a fleece set that he'll be able to wear in a year or two


Wednesday, July 9, 2008

Aiden's Sure Steps

Aiden's orthotics came in today. Actually, they have been ready for a few weeks now, but getting time coordinated with everyone is a bit hard.

When Danny, the orthotist, took them out of the package and started putting them on Aiden's feet, Aiden's PT, Karrie, started laughing. She said that these had to be the smallest pair she had ever seen.




Chris happened to be home at the same time, so once Aiden had his shoes on, Chris picked him up and Aiden stood on Chris's lap. Then we tried to get Aiden to stand up on the floor, which he did, but also took three steps with a lot of support.

Indentifing the Genes that Cause Down Syndrome



Tuesday, July 8, 2008

"Cribs" Meme

Yesterday, I was tagged by Debbie at 3 Weddings to do a picture meme. It reminds me of MTV's Cribs, only with everyday people. Well, I'm game...

There is only one rule: NO CLEANING BEFORE YOU TAKE THE PIC.

Dream Vacation: My dream vacation is to go to the Scottish Highlands. That is where my heritage lies.

My favourite vacation was to Camp Snoopy for my birthday one year. My birthday is on June 20th, Snoopy's is on June 23.


Self Portrait: Please be kind. This was taken after a day of shopping (Babies R Us had some really really cute clothes on clearance CHEAP!! so I bought Aiden's school clothes today. Then I had to go to the mall for a new pair of sneakers. Then a second trip to Wal-Mart for school supplies. Then wash my Jeep, then pick Aiden up from school (who by the way didn't nap on the way home), start a load of laundry, take Aiden and Chris to get hair cuts, go grocery shopping, fix supper, fold 3 loads of laundry.


What the kids are doing right now: Shhh, he's sleeping


Closet: This is where I'm anal. All my clothes are in order according to designer. Shirts on one side, jeans on the other, and belts seperating them. And everything hangs in the same direction.


Favourite Room: This one is easy! It's where I sleep!


Favourite Shoes: Now this one is hard. I have a lot of favourite shoes, depends on the occasion I'm going to. And I have over 60 pair of shoes, so it's hard to pick just one. So I picked three.
Doc Martens


40's style stilettos


Ariat FatBabies



Laundry Room: Which lives in the garage


Bathroom: I used to love the bathroom. I used to clean it everyday. However I am on strike from cleaning the bathroom. That is now the job of Chris and Chelsea.


Sink: Which one wasn't specified, so I did both
Kitchen


Bathroom



Fridge:


Now, who do I want to look inside of their homes? Hmmmm.....
Elliot's Expeditions, Noah's Trek, Finding Normal, Raising Joey