Days Never Forgotten

There are days in everyone's lives that they will never forget. An event happens, someone tells you something, or a phone call comes.

For me, it was a phone call. One tiny little phone call got the ball rolling.

I was at work, when I received a call from Aiden's cardiologist's office. I was to call Shelly at OU Children's Hospital to schedule Aiden's heart surgery. I made the phone call and talked to Shelly. She had to check the scheduling to see what the earliest they could get Aiden in. She would call me back.

Initally, Aiden's heart surgery was to be on February 1st of 2007. We were to leave for the hospital on January 31st for pre-surgical admit.

However, a little boy was born in Tulsa with hypo-plastic left heart syndrome, and was immediately flown to the same hospital to see the same surgeon. I graciously stepped down and let this little boy take Aiden's slot. He needed to see Dr. Cardio-thoracic surgeon more than Aiden did. I already had Aiden. I figured another mom needed the chance to have her son also.

So, the surgery was rescheduled for February 8th. Another call from Shelly came though and Aiden's surgical slot needed to be filled with another little heart. Again, we rescheduled Aiden's surgery, for February 15th.

I remember telling friends about having to rechedule Aiden's surgery. A few commented that since I was willing to let these other moms have the chance to be with their children, Karma had to be on my side.

I wonder if I hadn't, would Karma have kicked me in the butt?

$72.6 Million

Due to inclement weather, apparently a winter storm is heading our way, I was watching the news this morning. There was a list of school closings. Aiden's school, being one of them.

As I was reading the school closings list, I heard a familiar voice. On the news was Dr. Secondary Cardiologist. He was talking about the new Children's Hospital that is about to open.

I have seen 17 months of the 3 year construction. For the past two months, the construction crew has been laying concrete in the circle drive. And it's not just a normal drive. This has some pattern that I haven't quite figured out what it is.

So, after 3 years and $72.6 MILLION, next month, February 11th, Tulsa's new Children's Hospital will open.

The bad news is that I will have to learn the new "secret passage way" from the Dr's office to the hospital.

If the Shoes Fit

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Definition of Down syndrome

KIND

INNOCENT

WONDERFUL

UNIQUE

SMART

PLAYFUL

INTELLGENT

DELIGHTFUL

STRONG

LOVING

AWESOME

BEAUTIFUL

Things You Should Never Say to a Parent

Things you should never say to a parent with children with special needs.

1) "So are they going to live in a group home?" This is the like asking a parent of a "normal" child "So are your kids going to be living in a prison?"

2) "Are they learning anything in school?" This is like asking the parent of a "normal" child "So is your child stupid?"

3) "God know what he was doing when he gave you these children." We call this the halo effect. It's meant to be supportive but it makes you think that either God has a strange sense of humor or hates you.

4) "What kind of future can they have?" As if they aren't going to have a "good" future. What is the alternative - eugenics, euthanasia? Oh just shoot me now and get it over with.

5) "Why do my taxes pay for special ed classes? Is PT, OT and speech actually education?" We lost a friendship over this one. It's saying that my children are worthless.

6) "You have so much patience. God knew what he was doing." This is usually said right about the time that you're at the end of your rope and want to strangle the kid. Or when you've just blown up at your husband, or your wife, or the kid, or the teacher, or the bus driver, or the dog etc etc etc. See also answer to question #3.

If you've ever asked these question don't feel bad. We all have our off moments. Just remember when our answers aren't exactly what you were expecting don't be too suprised. We're just trying to get through the day with love, humor, perseverance, patience, kindness, and love.

Another Early Morning

Aiden went to bed a little after 10pm last night. And he slept all night. Problem is he was up at 5:20 this morning. And there was no going back to sleep for him. Instead, he was up playing and talking. I'm surprised he didn't wake up the house. While I showered, he played.

I went to give him his second bottle of the day which included his morning medications at 7am. This is when he decided he wanted to go back to sleep. The only thing is, he had to get ready for school. On our drive to school, he took a nap. He woke up when I picked him up from his car seat and once he realized he was at school, he was ready to go for the day. Once the other kids started to arrive, Mom no longer existed.

After I left school, I called Pam, Rhett's mom, to see how she was doing this morning. Yes, there is a time difference and normally I wouldn't call Pam at 7 in the morning her time. However, Pam and Rhett were up as Rhett is going in for his MRI today. And he has to go under general anesthesia for this. Now today, January 28, is a bad memory for Pam and it is the same date that Rhett was overdosed and at the same hospital they are going today. Please keep Pam and Rhett in your prayers today.

Also, I got a letter from Aiden's ophthalmologist for Aiden's school. Aiden had an ophthalmic evaluation earlier this month. The following is a summary of the evaluation:

Nystagmus - (shaking of the eyes). Aiden has had this since birth and it is common in children with Down syndrome. Fortunately, it is gettnig better.
Down syndrome - well, we knew that one
Right nasolacrimal duct obstruction - (clogged tear duct) surgery when he is stronger. Click here for that story
Hyperopia and astigmatism (Aiden is far sided and has my bad eye site. However, both is common in children with Down syndrome)
Improved cortical visual delay (Aiden's tracking objects with his eyes)

Well, we go back in July for an eye exam.

Also, if you haven't noticed, my Blogroll has gotten longer. Most of the blogs listed are Down syndrome related. There is one, however, that isn't about Down syndrome. Finding Normal, is an online friend of mine. We met on the Fall Due Dates 2006 forum while we were both pregnant. Debbie's daughter, Addison, was born with mosaic Trisomy 9 a rare chromosomal condition. Addison, like Aiden, has developmental delays and has undergone several plastic surgeries to correct cranio facial issues caused by fused skull bones.

Debbie hasn't been to the Due Date forum in quite some time. I can understand why. It is hard to see kids who are the same age as yours reaching all these milestones that our kids haven't even thougt about reaching. Their kids are all walking, while ours continue to struggle with crawling. Due to feeding issues or other health issues, our kids haven't broke the 20 pound mark, while others are these huge "chunks" of flesh. Don't get me wrong, it's great that these kids are reaching their milestones, but sometimes it hurts also.

Tax Break Petition

Tax Break for Parents and Guardians of Special Needs Children

To: U. S. Congress, U. S. Senate, All State Congressmen, Senators, and Governors

We, the Undersigned, are parents, guardians, friends or family members of special needs children. Every year during tax preparation time, we find that there are no tax breaks for the inordinate amount of money we spend on our children’s needs. Parents of healthy children get tax breaks for college tuition, yet no one is required to attend. The parents of special needs children, who may or may not ever be able to attend college, do not get tax breaks at all.

Parents pay thousands of dollars yearly in educational and therapeutic bills which the school districts and/or insurance do not pick up. NCLB and IDEA may try to force the districts to provide a Free and Appropriate Public Education for our children, but the districts are understaffed and underfunded. They find ways around them or try to fool uneducated, unsuspecting parents so that the districts don’t have to spend money. Rural and poorer school districts just don’t have the tax base to support these programs in addition to NCLB’s unfunded mandate.

Even if the districts can afford them, many schools will not use programs or therapies they do not consider educationally “proven”. Yet many of these programs, such as ABA and Fast ForWord, have had much success outside of the educational world. There is a great deal of misinformation about many of these programs. That many of this country’s educators and doctors are uneducated about programs and therapies for educating children with a disorder as epidemic as autism is unconscionable, yet it is reality.

Because of these factors, parents are literally on their own, and spend exorbitant amounts of money on these programs and therapies in order that their children can attempt to live in society one day. Many of these programs are cost-prohibitive and most are not considered to be medical expenses. Having a tax break will also give money back to the parents, which they can then spend in the economy.

We believe there should be both Federal and State tax breaks for parents who pay these extra costs. We are not paying for these programs and therapies because we enjoy it – our children need them, and we are trying to make sure that our children reach their full potential. Not being able to live productive lives only ends up costing all taxpayers more in the long run, especially when our children have to live off the government. The investment now will reap rewards later in many ways.

With this petition, we ask our Senators and Representatives to sponsor a bill allowing parents and guardians of special needs children to deduct their educational and therapeutic costs from their State and Federal income tax returns.

To sign the petition, click here

Even if you don't sign the petition, please pass it along to your friends. This is an important petition for families who need some assistance.

Mended Little Hearts

Yesterday I received an email from our local Down syndrome group, DSAT. It was about a new support group in our area.

This group, Mended Little Hearts, is for parents whose kids have undergone heart surgery. We'll have a monthly meeting about things associated with heart surgery. Also, we'll go to the hospitals to help support parents during the very trying time of having their kid go through the surgery. Believe it or not, it is extremely hard to see your child laying there on a bed, unable to move, hooked up to machines.

Also, we are there to help parents who have just gotten the dreaded news that heart surgery is needed. That news is like getting hit head on by a train. But, we also show them how the kids are soooo much different after the surgeries.

Before surgery, there is poor weight gain. Before surgery, you wouldn't dare dress your kids in white as they look really pale in white. But after surgery, the kids put on weight as most calories aren't being burned just keeping their hearts working. Their colour is so much better, they look pink instead of a bluish grey. The kids play better and don't sleep as much.

If you have had a kid who has undergone heart surgery, I encourage you to visit the above link and sign up for your local group. If you don't have one, start one.

Arrythmias

I've mentioned before about how Aiden's heart does weird things with his heartbeat. Sometimes it will be really high (in the 220s high), known as ventricular tachycardia. Since his last heart cath, it has periods where it is really low (40s), known as atrial bradycardia.

Thursday, we met with one of Aiden's doctors from his hospital stay in OKC (that's where he had his reparative heart surgery for the AV Canal defect and when the tachy episodes began). Instead of having to drive the 2.5 hours to OKC to see him, he came to Tulsa to Dr. Cardiologist's office. YEAH!!!!

First, when we get there, the receptionist made the comment that it isn't a week unless they see Aiden. Sadly, we are there once a week be it for a checkup or his Holter monitor. I had to fill out some paperwork for Dr. Electro-physiologist. Donna, the receptionist took Aiden to see where Aiden's chart was located. Apparently, he has a "floating" chart. It goes from one doctor to another in the office.

If you aren't aware of what an electro-physiologist is, that is a cardiologist who specializes in just the heart beat. A heart has an electrical system that makes the heart beat in a specific rhythm. This electrical system is called a "natural pacemaker".

Guess what? Aiden has two of these pacemakers. The second pacemaker is strong enough that it wants to take over causing the first pacemaker to become weaker. This is what is causing Aiden's irregular heartbeats. Oh, and it could cause an enlarged heart down the road.

The fix? Right now, Aiden is on medications to regulate his heart beat. We changed the dosage of one and switched the other to pill form. Dr. Electro-physiologist doesn't like Amiodarone in a compounded form; he said that the concentration loses it effectiveness. How does one get a 16 month old to swallow a pill? We crush up half of this pill and mix with a few CCs of water. Then into a syringe. And pray that Aiden doesn't spit it out.

If this current regiment of medications doesn't work, Aiden will be admitted into the hospital for observation while new medications are attempted.

And if that doesn't work, Aiden will undergo another surgery to place a temporary pacemaker into his chest and abdomen. The wires will stick out of his heart and the actual pacemaker will be in his belly. When Aiden is, oh say, 7 or 8, he will then undergo another surgery inside of his heart to destroy the second natural pacemaker.

Yes folks, this really is a heart only a mother could love.

Puzzled?

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Watching Football with Dad

Aiden loves to watch football. And this Sunday was no different. Usually he lies on the floor on his belly with his head up in the air. However, this time he decided to watch it sitting up.



Unfortunately, due to a trip to Mexico, our team was defeated and won't be going to the Superbowl this year.

Questions, Questions, and More Questions

I totally felt today's entry is blog worthy.

On one of our Ds forums, a newbie posted some questions. She doesn't have a child with T21, but she knows someone who has a child who just happens to be blessed. The mom wants to invite the child to a play group and had a few questions, which is totally understandable.

I have a lot of questions, I am sorry if I will ask personal questions.

Feel free to answer them or not. Sorry if I am not using the right terminology.

1. Are there any kids with Down syndrome that are not mentally behind?

2. Are all kids with Down syndrome slower then the average kids?

3. Should the relatives know everything or just some information?

4. Are children with Ds quieter, less demanding?

5. Do they understand everything around them or not?

6. Are there special toys they play with or do we get them the same toys?

7. What are some negative things about Down syndrome kids?

8. Positive?

9. Anything else I need to know?

She did get a few responses. Mainly wanting to know why she was asking. And this was her response:

Yes, I will and do treat that child as a person. But don't you treat a 5 year old different then a 1 year old?

I just know someone who has a child with down syndrome-I would like to include them in our play-dates, birthday parties - and if the mom is not providing you with the info, and pretending that she has a normal child - its hard. She don't want us to treat that child any different. I am not being mean - but the child is different. The child might be the same age as my child but is not able to do what my child is doing. Do I make any sense?

And sooner or later my kids will start noticing will ask questions - I will have to provide answers. But before I answer them I need to know what I am talking about. And I guess I just have a lot on my mind and would like to help out as much as I can. So, any info you moms can provide me will be helpful.
Again I am not trying to put anyone down - I am just looking for answers. But its hard for me to get answers because I don't even know what I should ask about, and what I need to know. I just read the general description of Down Syndrome. Basically that's all I know.

When I had my first child I read a lot about what to expect - when they start sitting, looking, playing, walking, what to feed him and when. I guess this is what I would like to know about Down syndrome is there books I can find on it?
sorry I am not very educated-but I would like to be. I don't know where to start.

Well, yes you do treat a 5 year old differently than a 1 year old. The 5 year old is a little more independent. However we don't treat a a 5 year old who just happens to have Ds any differently than a 5 year old who doesn't have Ds. A child is a child, regardless of anything extra. A child with Ds just happens to be blessed with a little something extra is all.

If you want to invite this child to a play group, then do so. Kids play with other kids regardless of ability. It's called being a kid. Your child will not focus on the differences UNLESS you point them out. Remember, you are the one who teaches your child. Your child is not born with prejudice, it is taught.

And I did answer her questions.

1. Is there any kids with down syndrome that are not mentally behind? Some children are higher functioning than others. Having Ds has nothing to do with it. Just like with typically developing children, some are gifted while others are not. Einstein was a mathematical genius, but he couldn't tie his own shoes.

2. Are all kids with Down syndrome slower then the average kids? The same answer as #1

3. Should the relatives know everything or just some information? Depends on if the relatives would treat the child any different. Our kids aren't different, the adults are.

4. Are children with Ds quieter, less demanding? Ummmm, that would be a big fat negative. Aiden screams like you wouldn't believe.

5. Do they understand everything around them or not? Do you?

6. Are there special toys they play with or do we get them the same toys? Aiden's toys come from the same stores you buy toys at, and I bet the same aisles. All toys are developmental toys. Sometimes we just use the toys differently.

7. What are some negative things about Down syndrome kids? That people sterotype our kids and think they are different.

8. Positive? Everything.

How would you have answered the questions?

Love and Hate

Michelle, Elliot's mama, over at Elliot's Expeditions tagged me with this meme.

Here are my loves:

1) The hugs and kisses I get from Aiden when he hasn't seen me for a while. Such as first thing in the morning and when I pick him up from school.

2) Aiden's laughter. (For that video, click here or just scroll down a few posts.) He laughs with his entire body, the way we should all laugh.

3) The way Chris loves Aiden. Even though Chris isn't Aiden's biological father, he is Aiden's Daddy.

4) The 10 minutes of peace I get every morning to thank God that Aiden is still with us.

5) I love that Aiden has Down syndrome. That one extra little chromosome has introduced us to many wonderful friends.

6) The way Aiden rubs his belly.

7) The view of Heaven I see when I look into the eyes of my child.


And here are my hates:

1) I hate that people use the "r" word to mean stupid. Aiden is developmentally retarded, but he is a long way from stupid.

2) I hate that Aiden will someday be viewed as a third rate citizen because he has challenges. Hopefully one day, that will change.

3) I hate that certain companies do not accept that my child comes first.

4) I hate that some people will never look beyond a disability and see the person behind that disability.


Now I am tagging the following friends:

Terry at Noah's Trek

Renee at Life with My Special Ks

Kari at Chanelle and Tristan

Have You Noticed the Countdown Clock?

It is counting down to Aiden's Happy Heart Day.

February 15th will be the one year anniversary. To commemorate, there will be lots of posting with reflections of the event, pictures galore, and Happy Heart Day party pictures.

If you are willing to endure it, you are welcome to join us in this time of celebration.

The Holter Monitor is Back

It's been two weeks since Aiden was last attached to a Holter Monitor. Usually he gets his "leash", so to speak, once a month. Due to Aiden's new bradycardia episodes and the change in his medication, it is on again.

For those of you who are unfamiliar with this device, it is a portable heart monitor that "records" heart events such as tachycardias and bradycardias. It is about the size of the older pagers.



What it does is basically a home administered EKG. It stores the recording until we return it to Dr. Cardiologist's office for the information to be uploaded and a readout printed out.

So until a little after 2pm tomorrow, Aiden will wear his monitor and hopefully it shows that with the decrease in Digoxin, his bradycardia episodes have decreased.

Wish us luck.......

The Sounds of Laughter

Photo and video editing at www.OneTrueMedia.com

Saying Bye Bye

No, we're not going to stop blogging!

Aiden has been on a special low-fat diet since his chylothorax episode back in May. He has been getting a special formula, known as Portagen. Portagen is a milk-protein based powder with medium-chain tryglycerides (MCT) for children and adults. It is used for defects in the intraluminal hydrolysis of fat (decreased pancreatic lipase, decreased bile salts); defective mucosal fat absorption ( decreased mucosal permeability, decreased absorptive surface); and/ or defective lymphatic transport of fat (ie, intestinal lymphatic obstruction). The latter being what chylothorax is. Not only is it expensive, it smells like wet dirty rocks.

Well, the last time I talked to Dr. Cardiologist, she said that she was going to start weaning Aiden off of the Portagen. We have already been giving Aiden a little bit of Pediasure to take with his medications, and he seemed to really like the flavour. Anything has to taste better than Portagen. And it smells really good. Of course it smells like vanilla milkshakes.

Tuesday, Dr. Cardiologist prescribed Aiden to eat Pediasure full time.

Translation: Aiden is no longer on a fat restricted diet. Granted, he can't go overboard on fat intake. But this is a start. Hopefully, he'll start gaining the weight he hasn't been able to in the last year.

Nap Time

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What is in a Name?

What Aiden Means

You are usually the best at everything ... you strive for perfection. You are confident, authoritative, and aggressive. You have the classic "Type A" personality. You tend to be pretty tightly wound. It's easy to get you excited... which can be a good or bad thing. You have a lot of enthusiasm, but it fades rather quickly. You don't stick with any one thing for very long. You have the drive to accomplish a lot in a short amount of time. Your biggest problem is making sure you finish the projects you start. You are balanced, orderly, and organized. You like your ducks in a row. You are powerful and competent, especially in the workplace. People can see you as stubborn and headstrong. You definitely have a dominant personality. You are friendly, charming, and warm. You get along with almost everyone. You work hard not to rock the boat. Your easy going attitude brings people together. At times, you can be a little flaky and irresponsible. But for the important things, you pull it together. You are very intuitive and wise. You understand the world better than most people. You also have a very active imagination. You often get carried away with your thoughts. You are prone to a little paranoia and jealousy. You sometimes go overboard in interpreting signals. You are very charming... dangerously so. You have the potential to break a lot of hearts. You know how what you want, how to get it, and that you will get it. You have the power to rule the world. Let's hope you're a benevolent dictator! You are a free spirit, and you resent anyone who tries to fence you in. You are unpredictable, adventurous, and always a little surprising. You may miss out by not settling down, but you're too busy having fun to care. You are a seeker. You often find yourself restless - and you have a lot of questions about life. You tend to travel often, to fairly random locations. You're most comfortable when you're far away from home. You are quite passionate and easily tempted. Your impulses sometimes get you into trouble.

What's Your Name's Hidden Meaning?

Making a Difference

A few months ago, I posted a question on several forums I frequent. The question was, "Do you use the word "retard"? A few people admitted to using the word to mean "stupid", most admitted to not using it, and two admitted to not using the word since having gotten to know Aiden.

Today, a friend from one forum, sent me this message:

I just wanted to tell you... I went into Baby Gap a couple of days ago, while Gina was in school. I had baby Evelyn in her stroller. As I walked into the store, two employees greeted me with a 'hello, how are you today" kind of thing... the lady on the left came towards me with a huge smile on her face, and that was when I noticed that she had Down syndrome.... she said "your baby is so beautiful, can I kiss her?" and I said of course, so she came up and gave Evelyn a little kiss on the cheek, and I actually got teary eyed, I thought that was so sweet. And at that time, I immediately thought, not that I do it often or can even remember the last time I thoughtlessly did, but "retard" is now not a part of my vocabulary. What the hell was I thinking?

And I thought of little Aiden when I met this lady working at the store, and I thought, he can have this great life, too, a nice job at a cool place, and get to mingle with people, and enjoy his days, too. I hope all the best for that little cutie, I do.

This is why we advocate. To make a difference in someone's life. Aiden was put on this Earth for a reason; maybe his reason is to change how people view those with special needs? This is a big step. We don't have to affect everyone, but knowing that even one person changed how they view those with developmental delays, is worth it. That person will, hopefully in turn, change someone else's way of thinking.

Morning Rituals

As I was reading blogs this morning, I happened across one of Aiden's readers blog. Carmi at Written, Inc. posed a question about morning rituals. This is an easy one for us. We have two morning rituals depending on what day it is.

On the mornings Aiden doesn't have school, rarely do I wake up before Aiden. He is usually awake, playing and singing in his crib. This is an awesome way to wake up every morning. And this is sleeping in for me; even though he NEVER sleeps past 7:30am. I wake up and get Aiden out of his crib.

First things first, he gets a milkshake breakfast bottle. A milkshake breakfast consists of Pediasure and his medications. If I told him his medications were involved, he wouldn't take them. I swear. While Aiden is eating breakfast, he is distracted long enough for a diaper change. And I say distracted lightly. Aiden is at the age where he wants to roll away from the diaper as quickly as possible.

About an hour after waking up, Aiden is ready for his second bottle of the morning. Only with this bottle, Aiden demands cuddle time. So we cuddle up in the recliner with Aiden's fuzzy blanket while he fights off an early morning nap.

On the days Aiden has school, my alarm clock goes off at 6am. This gives me just enough time for 10 minutes of morning reflection before the day starts. I must be showered, dressed, and make up on my face before it is time to wake Aiden up.

This is where a whole different Aiden emerges. Aiden HATES being woke up. He is a bear. It is a fight to get Aiden dressed, his milkshake, formula made for the day at school, socks on his feet left on long enough to get shoes on. And since now winter is upon us, the Jeep must be warmed up and thawed out before Aiden gets in it. His backpack must be packed for the day.

And then we fight rush hour traffic to have Aiden at school by 8:15am. It is a 45 minute drive to have Aiden at school. Tulsa rush hour traffic is horrendous.

Half way through the drive, Aiden is ready for his milkshake.

On His Way.....

to self feeding that is.

Chris gave Aiden a chocolate chip cookie yesterday. And Aiden started eating it, by himself. By the time the camera was brought out Aiden was done with the cookie. But we managed to get a picture of him taking a drink.

There Is Nothing to be Sorry About

Lately, a lot of moms who have a child with Down syndrome have been getting what I call the "eye rolling remarks". And they are remarks that are heard quite often when we tell someone new that our kids have Down syndrome, "I'm so sorry he has Down syndrome" or "He doesn't look like he has Down syndrome" or "That must be a heavy burden". And then there is the always popular sympathetic "I'm sorry" look. I, for one, hate that look.

What is there to be sorry about? Why do the "typical" population think that having Down syndrome is such a burden?

Yes, Aiden has health issues. But his heart condition is common even in children who DON'T have Down syndrome. Most children with Down syndrome, that I personally know, don't even have a heart condition. They are perfectly healthy children. In fact, probably more healthy than a typical developing child. For some reason, they don't even get colds.

It isn't Aiden's Down syndrome that keeps me running to a cardiologist or some lab for blood work. In fact, Aiden's pediatrician isn't even concerned with the fact that Aiden has Down syndrome. Aiden doesn't see the pediatrician for his Down syndrome. The few times we have had to make "special" trips to the pediatrician had NOTHING to do with Down syndrome. Aiden's hernia had nothing to do with Down syndrome, nor did his undescended testicles. They were caused by Aiden being premature.

As far as Aiden's heart condition goes, yes half of the children with Down syndrome do have the same AV Canal defect that Aiden has. However, tons of people who don't have Down syndrome also have a hole in their heart, but you would never know it. Every time we go to the cardiologist, the lobby is always full, but Aiden is the only one in there with Down syndrome. It wouldn't be a very lucrative business if they only saw kids with Down syndrome.

And as far as looking like he has Down syndrome, what are people with Down syndrome supposed to look like? With the exception of Pam's Rhett and Owen in Aiden's class, they generally don't look alike. And Owen and Rhett are virtual twins, I swear the resemblance is uncanny. Yes, there are features that are common in Down syndrome, the almond shaped eyes, the Brushfield spots, a gap between the toes (which Aiden doesn't have), lower set ears, and shorter fingers. But generally, people with Down syndrome look just like anyone else in their family. And personally, I think kids with Down syndrome are the most gorgeous kids ever. They say that all babies are cute. Well, that's not true. But all kids with Down syndrome are adorable.

So, why is the general population sorry? I think it happens to be jealousy. Kids with Down syndrome aren't likely to get into trouble with the law. They don't tend to do illegal drugs or drink. I'm not going to have to worry about where Aiden is at 3 in the morning. So what if Aiden wants to live with me past the age of 18? I know several 20 somethings that still live with their parents. And there is nothing wrong with those kids. Those are the parents I feel sorry for.

Oh, and a few more great things about having a kid with Down syndrome. I get to watch cartoons with Aiden longer, because he's going to enjoy them longer. I get to laugh and smile every day with my child.

People think that having a child with a "challenge" is a burden. Well, it isn't. Yes, things are done on Aiden's schedule. Yes, he is delayed in some aspects. But, he is 16 months old and is potty training. I know tons of kids his age, and are typical developing, that aren't even ready to begin potty training.

The hardest part of being Aiden's "Ama" is the health concerns. But as I said previously, just because the health issues are common in kids with Down syndrome, doesn't mean that they were caused by Down syndrome.

Because Aiden happens to have Down syndrome, Aiden has many many opportunities that aren't available to a typical developing child. Aiden gets private therapy once a week to help him learn new things. Aiden goes to a private school that is awesome. He has parents, grandparents, family and friends who are wrapped around his finger. He gets really cool toys to play with.

So the next time someone says "I'm sorry", remember what they have to go through as a parent of a typical child. Honestly, I don't know how they do it.

Harley Update

Still no Harley.

However we have contacted a local news channel because apparently Pug theft is running rampant in Oklahoma. Check out this article from cnn.com.



It's almost to the point where I'm ready to make a big sign to place in the front yard advertising Harley's bed, crate, toys, and a new bag of dog food. And as proof, they must bring Harley. Think the culprit would show up?

Peek-A-Boo

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Aiden Meets His New Cousin

Last week, my sister gave birth to her third child, a son, David Alexander.

Now if you have read through this blog, and bless you if you have, you would know that Aiden was a tiny little thing when he was born: 2 pounds, 13 oz and measured 15 inches. My sister gives birth to linebackers.......

I joke you not, this kid is ready to go to college. David was born weighing 9 pounds, 4 oz and measured 22 inches. Folks, Aiden is now 16 months old and is just a little bigger than his 4 day old cousin.

Today, I went to take some things to my sister for the baby. Clothes that Aiden HAS JUST outgrown. Here is the first picture of Aiden and David together.



And I must mention that while both of the boys were "evicted", Aiden was early (6 weeks) and David was late by a week. He was originally due Christmas Day.

Oh, and on the sidebar, the picture of Aiden as a baby being held by his cousin, Little Stephie, that is David's older sister. And she was a big baby also. Her nickname was ChunkyButt at birth.

Clogged Tear Ducts

Aiden has a clogged tear duct. One that he has had since birth. Sometimes the tear duct opens up on it's own, sometimes it doesn't. Aiden's hasn't.

Today Aiden had an appointment with his ophthalmologist . Aiden needs to undergo a tear duct probing. This requires Aiden to be sedated, elective.

Dr. Cardiologist doesn't want Aiden to be sedated unless absolutely necessary. It is normal for most kids with heart condtions to undergo a sedated echo cardiograph. Aiden has never had one and won't have one.

See the dilemma here.......

Basically, Aiden's clogged tear duct will have to wait until Aiden HAS to be sedated again.

Needed: Your Stories

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Also, we are taking submissions about your stories. Please feel free to email me or at down_syndrome_47pieces@yahoo.com for the log in id and passcode.

Down Syndrome: The Journey Ahead

courtesy of the Down Syndrome Association of Greater Cincinnati

Aiden's Dog is Still Missing

I posted on the local missing pets website about Harley missing. And I received an email the next day from a woman who claimed to have found him.

Unfortunately, this was a scam. This person wanted money for a dog that she never had.

Aiden misses his friend and nap time companion. Hopefully soon, Harley will return.

Not All Kids Like Pictures

Aiden hates the camera. He will clam up everytime he sees it. Chris was holding Aiden last night and Aiden was laughing and playing and talking. So, I decided to get the camera out. As soon as Aiden saw the camera, this is what he did.......

Photo and video editing at www.OneTrueMedia.com

And of course I got a few still shots Now, how do the professionals get kids to smile and laugh and act like they enjoy the seemingly unending photoshoot?