Weekend Update

Friday morning, Chris left for work and not long thereafter he called about a few garage sales just around the corner from the house. And he said that they had a few kids toys. So after Aiden woke up and had his morning milkshake and got dressed, I put him in his Kettler and we went for a walk.

The first garage sale had a bunch of baby stuff. Right next door though was another garage sale though.....

I had to send Chelsea back to the house for the Jeep.

Seriously....

For $17, I got a Little Tikes fort with slide, a Little Tikes see saw, and 3 Ralph Loren Polo jumpers.

There is a slide at school, but Aiden doesn't like it. He is a little hesitant sliding down, but he'll slide IF I hold his hand and say "WHEEE!" then he'll clap at the bottom. The see saw he absolutely loves!

Saturday, we made the trip to Wal-Mart for diapers. They finally have the turtle sandboxes, but no play sand. What good does that do?

Today, we went to the mall; Aiden had to have new shoes to fit his new orthotics. He just wasn't allowing his K-Swiss on his feet anymore. I did buy him a cheap pair of shoes at Wal-Mart the other day to wear around the house, but he does need good shoes for school.

On the way to the mall, Aiden fell asleep. I was hoping to keep him napping through most of the mall experience, but as soon as we hit the doors to Sears (which is where Chris has to park and I get turned around everytime and lose my bearings) Aiden is awake. I wanted to look for a Kindle and I know that Sears had something similar, but no one knew what it even was.

We then went to Penny's because that is normally where I would buy Aiden's shoes. But their selection for summer sucked. No, seriously. Then we hit the Men's section because Chris needs shorts and shirts for the summer that aren't t-shirts.

Next was StrideRite. There were 2 pair of shoes that fit my requirements and I let Aiden pick out the one he wanted. However, the smallest they had in that particular shoe is a size 5, which in StrideRite shoes, is way too big for Aiden's feet. So, we had to go with the other pair and Aiden was not too happy, but they fit his feet with the orthotics. And I saved $10 on the pair he didn't want. Of course....

Next was the Eskimo Joe's store. I wanted to get the Oklahoma Special Olympics shirt, but this store sent all their SOC shirts to the Stillwater store, so I had to order online and saved even more $$). But I did manage to buy some new EJ cups and tumblers since mine have disappeared into thin air.

Then we went to lunch and looking at houses. For some reason, certain members of this household think that we need a bigger house. I don't know why. Aiden fell asleep while we were out looking at houses. And apparently took a pretty good nap because now the Little Boy refuses to go to bed.

Eeeeeeee

"Eeeeeeee" = Eat (translated from Aiden speak)

"Eeeeeeee" is what we hear when Aiden decides that he is hungry and wants to eat something.

This morning, I woke up to Aiden saying "Eeeeeeeee". Okay, Aiden is ready to eat at 7am.

I walk into Aiden's room and find him sitting up in his bed with his GloWorm facing him, also sitting up.

Aiden is trying to feed his GloWorm imaginary food from an imaginary spoon.

Yes, he did.

The Mommy, The Little Boy, and His Baby

 

 

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MDW Weekend

Friday we met our new neighbours next door. They have three kids, a German Shepherd and a Schnauzer. Dogg thinks he must protect me from the Shepherd. Aiden made his way into his pool by himself and we went shopping.

Saturday, not much happened. Chris's mom came over to watch Aiden as I was going out with friends from high school; only we were supposed to be in Tulsa, but the plans got changed to OK City. So Grandma Nise spent the night to help Chris with Aiden.

Sunday when I got back, Aiden attached himself to me and decided that we were one again. I wasn't allowed to unload the Jeep unless Aiden was there. I think he was afraid that I was going to leave him again.

Monday, we went shopping as Aiden needed a new pair of shoes to wear around the house. He also refused to take a nap yesterday. This lead to a very early morning for Mommy since Aiden decided to fall asleep at 6pm last night and wake up at 4 am this morning.

This morning, Dr. Pediatrician called with the results of the 72 hour poop test. The sample came back normal, so now we are waiting on a report from Dr. Food. Aiden has been on his new oil for a week now. Yes, only a week. The first shipment came in a smashed glass bottle, thanks UPS! So I had to order another one. It doesn't seem to bother him at all though.

We then spent the morning in Tulsa due to television issues........ and went to lunch and Wal-Mart as I forgot to get toilet paper yesterday. We got home just in time for Aiden's ST to show up. He wouldn't show her any of his new signs (build, light, I love you, fish) though. For some reason he refuses to talk when ST is here, but loves to talk to his PTs.

God Doesn't Make Mistakes

Turn the volume up and grab the tissues!

Stolen from Shannon, who stole from Renee.

Summer Break Pt 1

Aiden goes to school year round, so he has several mini breaks during the year. Summer is no exception. Aiden is on his first of 2 summer vacations. School let out Wednesday and he will not return until June 17. Then he will go for 5 weeks, then out another 5 weeks.

So, Thursday I filled his swimming pool. He's been eyeballing it sitting in the garage, so it was time to bring it out. We have also been having 80+ degree temperatures. However the water is still freezing, so we had to let the water warm up for the biggest part of the day before he even thought about getting in it.

And on Friday, Aiden decided to let himself in his pool.

 

New Feet and Holter Monitor Results

Aiden's orthotist brought Aiden's new Sure Steps yesterday. I wasn't here when Danny came out to fit Aiden, so Chris got to pick the colour theme; he went with the Jungle print.

The old pair is on the left and the new pair on the right.

And just for a size comparison, the old pair fit in the new pair.

And then Aiden had therapy with Karrie. He so wouldn't walk in the gait trainer for her, but he did manage to walk backwards in it - on purpose - and ride his bike around the block keeping his hands on the handle bars for 90% of the time.

After Karrie left, Dr. Pediatric Cardiologist's nurse called. The last Holter monitor (from last week) came back and Aiden still had a few minor "pauses" so we had to take him off the Sotalol. I wish they had came in the day before; I called the pharmacy to refill all his meds.... Oh well. Aiden goes back in June for another Holter monitor.

And Aiden has been wanting to play in his pool; everytime I open the garage he sees it and reaches for it. So this morning I filled it up and we're waiting for the water to warm up before he gets in there. Hopefully, he will cooperate and I can get some pictures.

It's Not a Disease, It's a Personal Characteristic

Interview: "Down Syndrome is not a Disease, but Another Personal Characteristic"
An interview by Digital Solidarity (Solidaridad Digital) with Pablo Pineda, Spain

Pablo Pineda is the first person with Down Syndrome to obtain a major degree from a regular university on Spain. Not quite satisfied with such an achievement, he is currently studying educational psychology, while working at the municipality of Málaga, Spain.

His success has been accompanied by constant struggle against prejudice, particularly that surrounding Down syndrome, not a rose garden. Pablo Pineda told us that this type of disability is not a disease, but: "another personal characteristic."

During a recent "Documentos TV", a program of Spanish Television (Televisión Española), Pablo Pineda demonstrated how his disability did not limit him from conducting a regular life. Following are highlights from the interview.


Was it very hard for you being in the university?
Yes, it has been very hard to confront the existing prejudice regarding Down Syndrome and at the same time to deal with the academic demands of higher education. Yet these challenges have also been gratifying.

What prejudices exist around Down syndrome?
First I do not consider that Down Syndrome is a disease. For me it is a personal characteristic. I am fine and healthy. We must not be treated as sick. There are other prejudices and you could write a book about them. There are reactions like pity, the misconception that we are not intelligent, and a long list of social and moral incorrect misinterpretations. Fortunately, we are overcoming some misconceptions. I am just doing my part and demonstrating that I am as competent as anyone.

Do you know if the situation of persons with Down syndrome is better in other countries?
Italy is the only European country I know of where things are better for persons with Down syndrome. This has to do with the democratic tradition of that country. The disability issues have been considered there for a long time. As for Spain, with a recent democratic history, disability issues are now being addressed, and in general, things are not bad. We can say that Spain and Italy are the leading countries in this field. That is good, yet there is a lot to be done.

How do you get along with your classmates and teachers?
There was a surprise that was overcome: nobody expects to have a person with Down syndrome as a classmate, and after that my communication with the rest of the students was fine, and soon I made friends in all the classes. I found old companions in the education psychology classes and that was good. As for the teachers I am just one more, since I do not need anything special. They teach the lessons and I take notes.

What do you like most about the university?
Without doubt the best things are sharing with my classmates and participating in all the activities. I enjoy independence. Anyone attending a university campus knows that you do what you want, no one is controlling you. Being at the Institute emphasizes this sense of liberty.

What would you like to do in the future?
I want to work. Where... we will see. As everybody else I want to work in my field, in the area of education.

What message would you like to send to society?
I would like to become an example. I want to demonstrate that if one puts into work whatever one is able, you can do what you want. But beside what I was able to achieve, I also expect society to do its part. I do not want this to be a one way effort. This is a start of success and shows people that we are as competent as the rest. If you are the one who is setting up the barriers, you are then destroying possibilities for others. And, on the other hand it is essential for society to understand all of these things.

For additional information, please contact Digital Solidarity.

You're Not THAT Big.....

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The Shower Scene

This is what happens daily when I shower

tap, tap (fingers)

"Momma"

"What Aiden?"

Tap, Tap (more fingers)

"Momma"

"What Aiden?"

knock, knock (hand)

"Momma"

"What Aiden?"

Knock, Knock (louder hands)

"Momma"

"What Aiden?"

KNOCK KNOCK (kicking the door)

"MOMMA!"

"No Aiden, Momma is taking a shower"

Sunday Play

I finally got to mow the yard today after 21 days of rain. Due to Chris's allergies, he can't mow the yard...

After the wet grass dried, Aiden so desperately wanted to go outside and play. So I got his socks, orthotics and shoes. He was more than willing since he actually helped put them all on his feet. Once we got outside, he walked straight to the Jeep as if we were going somewhere. When he realized that we weren't leaving, he decided that a walk up and down the street in front of the house would suffice.

Then, he noticed that all the neighbourhood kids were out riding their bikes and he began to laugh. So, I decided to take his Kettler out of the garage and give it another try.

He did manage to keep his hands on the handles and let me take him on the street in front of the house without throwing a tantrum.

Dear Aiden

I know that you are a boy and you are totally into adventure, however there are a few things you need to keep in mind.

If you can not see over it, you should not climb on it. The arm of the sofa is further off the ground than you realize. Honestly.

If you want to walk up a set of stairs (or even just a step for that matter) by yourself, you have to learn balance. Concrete is more stubborn than you are. Your head will not crack the concrete.

Mommy's glasses are for Mommy's viewing necessity. Please leave them on her face. You will be getting your own soon enough and you will realize the importance of vision and the joy of seeing things in front of your face.

Poop is meant for the toilet, not the walls, carpet or furniture. Please stop finger painting. I believe we have covered this topic before.

Trash cans are necessary; they are not for your entertainment. The contents do not belong scattered over the living room.

The same rule applies to Mommy's purse.

Pens are meant to write on paper. If you want to colour or draw, Mommy will get you crayons and paper. Your face is not a canvas.

When Mommy is on the computer, it is because she is doing something. Please do not take it upon yourself to shut the computer down by unplugging it. Mommy is aware of how to properly shut down the system without crashing it.

Worms are meant to live outside, they require dirt. Mommy's carpet does not. Please do not pick them up and bring them in the house.

When we are going bye-bye, please wait for someone to assist you to the car. It is not safe to go out there yourself. However Mommy is proud that you do realize you must be in your recliner car seat with the seat belt harness in place and that you are trying so hard to put the seat belt on by yourself.

Love Always,

Mommy

A Note from Aiden

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The Holter Monitor is Back

Have you ever had a re-occuring nightmare? Most of them don't come to fruition, but mine does - on a regular basis.

Following Aiden's last stint in the Children's Hospital for his blue spell, the Warden Dr. Pediatric Cardiologist sent Aiden home on the Holter monitor. He was due for it anyhow, it had been 6 months since his last one.

And usually I get a phone call a few days later with the results. I generally like those phone calls as the monitor didn't pick up on anything. Generally.

Not this time. Unh unh, nope, didn't happen. Aiden's Law - if it can it will and usually does.

His heart "paused" - or stopped - 3 or 4 times for up to 4 seconds.

So we dropped the dosage on the Sotalol by half. He only gets half the dosage he was getting.

Today Aiden had his 3 month check up with cardiology. I knew we were leaving the office with the Holter monitor.

Dr. Pediatric Cardiologist said that depending on today's monitor, IF Aiden doesn't have anymore "pauses", we're good. However, (don't you just love when that gets said?) IF Aiden's heart continues to pause, then we take Aiden completely off the Sotalol and do another Holter.

Depending on what that Holter shows...

Either the second natural pacemaker has been chemically stopped long enough that it no longer works and hopefully the tachycardia is a whole lot better.

or ... (yeah, had to throw that one in there)

Aiden gets a for real pacemaker.

Dr. Pediatric Cardiologist is hopefully that the tachycardia is under control.

But no one is holding their breathe.

Mother's Day

We hope you enjoyed your Mother's Day, if not we're sorry. If you submitted a picture or two for the montage THANK YOU!!!

Mine actually started off good. Aiden slept in. I did wake up before he did - I woke up at 7am and since he was still asleep, I went back to bed. Chris then woke up and I assume that Aiden heard him moving around and woke up. 45 minutes later - and there is a reason for this - Aiden and Chris woke me up with breakfast in bed. (As soon as I was finished with breakfast in bed, Chris went back to bed.)

A little after noon, I woke Chris up since I wanted to go to Barnes & Noble to get the last two books in the Twilight series. I had to buy hardcovers since I really didn't want to wait until August for the paperbacks. Not really a series I intended on collecting, but.... (There is only one series of books I have every single one in hard cover and that is Diana Gabaldon's Outlander series. I am inpatiently really anxious for the next installment to come out.)

On the way, we stopped at the cell phone store and Chris bought me a new cell phone. I have been wanting this phone forever. I have also needed a new one since mine is over a year old.

We then went to Academy Sports. Chris wanted to look at their handguns. He purchased one. A Smith & Wesson 9mm. Not exactly the one he wanted, but.... I'm not sure why he wants a gun, it will never be allowed out of the box with my rules that it has to be kept locked up at all times.

We then went to a late lunch/dinner at a steak house. I ordered a steak, baked potato and salad along with a High Seas Margarita (pretty good - it has Patron - but too much margarita salt). Aiden was a little too interested in it, so he got to slime my iced tea.

Aiden went to bed at a decent time, which is good as he had an appointment with Dr. Pediatrician first thing this morning. And he slept all night. She checked his weight - he's gained 100 grams in a week; so she was pretty excited.

Happy Mother's Day

Make an on-line slide show at www.OneTrueMedia.com

If You're Reading This Today.....

I DESPERATELY NEED YOUR HELP!!!

I am working on something special for Mother's Day and I need pictures - yes, of YOU!!! Moms. The pictures can be of you by yourself, with your kids, your fur babies, even with your mom.

Please consider this and if you are willing email me your pictures. If that email doesn't work, you can also email me here

King of Boobs

You know that Victoria's Secret Fashion Show that airs on television right before Christmas? Aiden is fascinated with that show and is glued to the tv. During the last season of The Bachellor, they aired a segment where the girls were immortalizing their busts. Again, Aiden was glued to the television.

Boobs. Aiden is in love with boobs.

Today, Aiden stuck his hand down my gynecologist's shirt and attempted to give her a breast exam.

Give Me A Kiss

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The Nutritionist

 While Aiden was at school this morning (was being the operative word because he decided to throw up during art class), I got to go meet with the nutritionist at Dr. Gene's office. Dr. Pediatrician and Dr. Guts said that we can't change Aiden's diet in the middle of testing, and the nutritionist agreed. She wants to keep Aiden on the same diet, with one little exception.

She wants to trade the corn oil for MCT oil. MCT oil is short for medium-chain triglycerides. Medium Chain Triglycerides (MCTs) are fats that are naturally found in coconut and palm kernel oil. MCT's are more easily digested and rapidly digested than other types of fats, as they require lower amounts of enzymes and bile acids for intestinal absorption. MCTs are metabolized very quickly in the liver and are reported to encourage an increase in energy expenditure, while decreasing fat storage. Numerous studies suggest that substituting MCT Oil for other fats in a healthy diet may therefore help to support healthy weight and body composition

So, I went to Walgreens. They don't carry it, can't get it.

Called our compounding pharmacy. Don't carry it, can't get it.

Called another compounding pharmacy. Don't carry it, can get; at $90 a quart.

Guess what insurance isn't going to cover?

I did manage to find an online source of 32oz bottles (I don't want to get a big bottle, don't know how Aiden is going to react to it.)

So, we'll try that.

Not Facing Fear

I didn't sleep much last night, maybe 2 hours. I could not fall asleep. I suffer anxiety big time.

Aiden decided that 4:22am was a good time to wake up. I took him back to bed with us in hopes that he would fall back asleep, but he just wanted to laugh and giggle. I got out of bed at 5am, since I was probably keeping the child awake.

At 6:30 this morning I had to take 2 Halcion. If you're not sure what that is, it is a sedative for dental procedures. Yes, I require sedation to go to the dentist. I hate fear dentists. So much fear that I must be sedated before I even leave the house. Sedated enough that Chris had to get Aiden ready this morning. There was no way I was capable of doing it myself.

I met the Grim Reaper this morning. I had a root canal scheduled at 8am this morning.

When we got to the office, Dr. Teeth asked how I was doing. "Yep." Then he asked if I was ready to take the other two Halcion pills. "Yep". Serious sedation required.

The nurse seeing that I was already partially sedated enough to require assistance maneuvering around corners helped me to the execution chair. I then readied my iPod as I really don't need to know anything that is going to happen to assist in my death. The nurse said that it was good thinking on my part to take something with me. My thinking is if I can't hear the dentist talking to me - which I have never understood. His hands and various other instruments of death are in my mouth, it isn't like I can reply back to his stupid questions anyway. Besides that, I really don't want to hear the sound of any drill coming near my head. I have seen first hand what drill bits can do to metal, my head - teeth included - are not as strong as metal. I took the other two pills even though the nurse thought I was sufficiently sedated. I'll be the judge of how much drugs I need.

I turned on the iPod and hit shuffle. Good enough, let the execution begin. However the nurse said something to me that she thought required my attention, so the ear buds had to come out. She was informing me that she was beginning the gas chamber. Something about if "it gets too much, let me know." The more gas the better, right? My hopes were not to remember even walking out of my front door this morning.

Now, I am the type of person IF I happen to wake up during a death sentence, I freak out. Things tend to come back to my memory and I don't want to remember them. Being at the dentist having a pig snout attached to my face is one of them. So, I threw up, fortunately I think I actually made it into the biohazard can and not the nurse's lap.

A little after 5pm, I woke up in back in bed. I know today's events weren't a nightmare. My face hurts and I have my tooth back. I also have the curse of sneezing every 10 minutes due to the fact that I feel like something hard is stuck up my nose.

Hopefully, Aiden had his PT session today and Chris cooperated with the therapist.

Entertaining Aiden

So I go get gas today. When I return to the house, I can hear - actually hear - the little boy laughing from inside the house. I am standing outside 4 feet away.

I walk in the house and ask him what he finds so funny. Chris is video taping this.




If you can't tell what is on the television, it is the Strongest Man Competition on ESPN. The competitors are throwing kegs over a high jump bar.

Awesome Bloggy Give-A-Way

Aiden's friend, Parker and his momma are giving away a freshwater pearl necklace. Well, actually it is a gift certificate to buy a freshwater pearl necklace or whatever else your heart desires.

Sign up to win here

6 Month Dental Appointment

Aiden had to visit Dr. Teeth today for his 6 month exam. Aiden loved flirting with all the nurses/techs, but he was not too happy about getting his teeth brushed. He threw a fit and then his gums started bleeding.

Dr. Teeth prescribed amoxicillin since Aiden is at risk for endocarditis. And that is deadly, so we avoid infection as if it were the plague. Also, Aiden now has to be subjected to the torture of having his teeth brushed 3 times a day to toughen up his gums. Dr. Teeth also prescribed an anti-inflammatory rinse to help the soreness from the grinding Aiden does.

Aiden also has de-calicification on his bottom teeth, so he'll be getting caps put on his teeth.

Aiden goes back in 6 months for cleaning.

Happy Birthday Grandma Nice

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