Spring School Picture

A couple of weeks ago, Aiden had school spring portraits. I dressed him in spring colours, but no one knew which background the photographer was going to use.

We got two sets of proofs back and we really were not impressed with either proof. One picture, he wasn't even looking at the camera. The second picture, he was looking at the camera, but he wasn't smiling. Actually, he wasn't smiling in either picture....

He was being distracted by the photographer snapping her fingers at him trying to get him to look at the camera. A lot of photographers use this method to get the kids' attention, but with Aiden, he snaps his fingers right back at you.

One Week with the "Ears"

It's been one week with Aiden wearing his hearing aids. And he's doing really well. The only one he really takes out on a regular basis is the left one, which doesn't fit properly and it's the one we're having remade. And now I can tell Aiden that we're going to put his "ears" in and he will sit still while I put them in. He even tries to help by "leaning in" during the insertion into his ear.

Aiden has started saying a new word "Num Num Num" for "yummy". He saw his Club crackers today and kept repeating "Num num num" for a good minute and a half. Progress is being made. I also asked him today if he wanted to go outside, which he promptly signed "slide". At least he's putting the two together. Speaking of his "slide" I got a questionnaire from MAW today. I'll have to fill that out. They also want pictures and a brief story of his wish. Hopefully, they'll settle for a link to the pictures, otherwise someone is going to wind up with a ton of emails.

It's Not Innate

 "Borrowed" this from JoJo's facebook status after they attended the DSAT Easter Egg Hunt:

Ok - so I take JD to the DS Easter Egg Hunt, Steph sends us some links to some really cool videos to help kids understand Down Syndrome. We had a great time, come home and from my 6 year old comes: "I don't know why you wanted me to watch the video mom - those kids were just like me, I just don't have glasses or hearing aids." - Just goes to show you, prejudice and judgment are taught - NOT innate

I'm Huntin' Wabbits

Today was our local Down syndrome association's annual Easter Egg Hunt. This was our first year attending due to racking up those pesky "frequent flier miles" or the weather being nasty. I invited my friend JoJo and her son JD. This was JD's first time of meeting Aiden, so I sent some video courtesy of the NDSS about children with Down syndrome to kind of "prepare" him for meeting someone with Down syndrome. The only thing JD was curious about was Aiden's "ears". JoJo explained what hearing aids are and I took one of Aiden's hearing aids and let JD "hear" what one was like.

JD and his basket

While we waited for the actual egg hunt to begin, we went inside and signed up for the door prizes. Apparently, I have no clue as to how big jelly beans are (they weren't Jelly Belly), so I missed the jelly bean count. Sullivan from Aiden's first school, the Little Light House won that. And I was at least 25 off on the malted milk eggs (they weren't Cadbury Mini Eggs). And the grand prize was a huge Easter basket. We didn't win that either. JD did though. I'm not sure what all was in it, but it had A LOT of stuff in it.

Then it was time for the egg hunt. I guess the last few years, it was a free-for-all with all the kids competing for the eggs, which left some of the kids out. This year, they sectioned off the park by age. Aiden was in the "Lamb" group for 0 - 3 year olds. He did pretty good "hunting" his eggs. **Granted, I did manage to sit his basket by the eggs he was hunting and he crawled up to the egg to put it in his basket but hey, it worked and he got to hunt eggs LOL!**

After the egg hunt, we were notified that the Easter Bunny had arrived. So we went inside to take pictures with the Bunny. Aiden was fine with the bunny as long as he was 10 feet away from said person in bunny suit. I can't say as I blame him, I am the same way with clowns. (Speaking of, why does DSAT insist on having clowns at all the functions? Shivers)

Well, on to why you're here. The pictures...

A Friday Meme

TEN TO START.

1. Are you single? ... Nope

2. Are you happy? .... For the most part. But some of that is drug induced.

3. Are you bored? .... Somewhat, but I need a blog post. I've been lacking lately.

4. Are you naked? .... No!

5. Are you a blonde? .... Not currently.

6. Are you moody? .... Depends on if the drugs have kicked in. And for those of you wondering, yes I take Happy Drugs. Got to.

7. Are you a lover/hater? .... Depends on the person of which we're speaking.

8. Are you hot/cold? ...Kind of chilled at the moment.

9. Are you Irish? .... Partly

10. Are you Asian? .... No. Though I do want Asian hair. At least it's already straight and I wouldn't have to spend 30 minutes straightening it on a daily basis.

TEN FACTS.

1. Name: ... Stephanie

2. Nicknames: .... There's a few.

3. Birth mark: .... I've been told a little heart/strawberry shape on the posterior end of me

4. Hair color: .... Currently, 2 shades of red and some blonde highlights thrown in there.

5. Natural hair color: .... I couldn't tell you. I honestly don't remember.

6. Eye color: ... Brown

7. Height: ... 5'4".

8. Facebook Mood: .... There's a Mood app on Facebook?

9. Favorite color: ...Blue and green.

10. One Place to Visit: .... the mall?

TEN THINGS ABOUT YOUR LOVE LIFE.

1. Do you believe in love at first sight? .... No.

2. Do you believe in soul mates? .... Kinda.

4. Have you ever been hurt emotionally? ... Yep.

5. Have you ever broken someone’s heart? .... Not that I am aware of.

6. Have you ever been cheated on? ... Yep

7. Have you ever liked someone and not told them? ... No, I eventually tell them

8. Are you afraid of commitment? ... Not in the slightest.

9. Who was the last person you hugged? ... Aiden

10. Who was the last person you kissed? ... Aiden

TEN THIS OR THAT.

1. Love or lust? ...Both

3. Cats or dogs? ... Dogs, though not too happy with Hans today.

4. A few best friends or many regular friends? ... A few besties with many acquaintances

5. Television or internet? ... Internet, can always watch TV online hehe!!

6. Chinese Or Indian? ... Chinese.

7. Wild night out or romantic night in? .... Why can't I have both?

8. Money or Happiness? ... Happiness, but I am happiest when I have no money worries.

9. Night or day? ... Night.

10. MSN or phone? ... Phone

TEN HAVE YOU EVER.

1. Been caught sneaking out? ... I don't need to sneak out, I can go out whenever I want.

2. Been skinny dipping? .... Yep.

3. Stolen? ... Nope

4. Bungee jumped? ... Nope. No desire to fall to my death.

5. Lied to someone you liked? ... Hahahaha! I am brutally honest

6. Finished an entire jaw breaker? ... Probably not

8. Wanted an ex bf/gf back? ... No!! they are an ex for a reason.

9. Cried because you lost a pet? ... Yes.

10. Wanted to disappear? ... Many times.

TEN PREFERENCES IN A PARTNER.

1. Smile or eyes? ... Both.

2. Light or dark hair? .... as long as he has hair....

3. Hugs or kisses? ... Both.

4. Shorter or taller? ... Taller, I can not even begin to imagine being with a man shorter than me, that would just be illegal.

5. Intelligence or attraction? ... Both.

6. Romantic or spontaneous? ... Again both.
7. Funny or serious? .... Both.

8. Older or Younger? .... Older

9. Outgoing or quiet? ... Both

10. Sweet or Bad Ass? ... Both

TEN HAVE YOU’S.

1. Ever performed in front of a large crowd? ... Yes.

2. Ever done drugs? .... I do drugs every single day ;o)

3. Ever been pregnant? .... Ummm yeah once or twice.

5. Ever been on a cheer leading team? .... No.

6. Ever Been on a dance team? .... Yes

7. Ever been on a sports team? .... Only at school.

8. Ever been in a drama play/production? ... Only at school.

9. Ever owned a BMW, Mercedes Benz, Escalade, Hummer or Bentley? .... In my dreams

10. Ever been in a rap video? .... No.

TEN LASTS.

1. Last phone call you made: ... Cardiology

2. Last person you hung out with: ... JoJo

4. Last time you worked: ... Today. Being a SAHM IS A JOB!

5. Last person you tackled: ...Princess Not So Bright

6. Last person you IM’d: ... Kris

8. Last person(s) you went to the movies with: ... Chris.

9. Last thing you missed: .... My sanity?

10. Last thing you ate: .... Leftover spaghetti.

Day 3 of Hearing

I kept Aiden home from school the day Aiden got his hearing aids. Well, actually, we didn't get out of the office until he would have been home from school anyhow.

On Wednesday, Aiden went to school with his "ears". And he did really well. His teacher said that he was responding a lot faster and signing to everything. He was signing his colours and ABCs.

I have noticed the same difference in Aiden since getting his "ears". He is noticing a lot more sounds. The fish tanks, the heater kicking on at his physical therapy gym. He sings and dances with the Imagination Movers. He's a lot more vocal. Aiden is watching how things are said now.

Today was his first private speech therapy with his new "ears". OMGosh! He spoke. A LOT! He asked for bubbles and balls. 

Hearing Aid(en)

Today was the day that I got a child who could hear. We left early this morning to drop the dog off at the groomers and drove the 45 minutes to audiology. Aiden's hearing aids finally came in.

We sat in the waiting room for almost an hour playing with Aiden. At the same time I decided his diaper needed changed, his name was called so the audiologist had to wait for him.

We get back to the little room and she tests the molds in Aiden's ears. Aiden got the Phonak Naida hearing aids. They are quite small. The right mold fits perfectly, but the left mold is a little too big, so we are having another one made.

She spent time programming the hearing aids and leveling the sound. That was the majority of the visit. Then she put the devices in Aiden's ears and turned them on.

Aiden didn't like hearing. It scared him. He whined a lot and was trying to get away from all the sounds. Chris turned on the iTouch and played Aiden's favourite music. Aiden was then enthralled to finally hear the music clearly.

Because Aiden has a hearing loss due to nerve damage (the audiologist thinks the ECMO caused it. Apparently a lot of kids who received this life saving procedure end up with severe hearing loss), she wants to follow Aiden closely. We will make a lot of return visits for sound booths and all that jazz. It is a possibility that the hearing loss will progress as Aiden gets older.

I forgot to take the camera, so I didn't get Aiden's reaction to hearing for the first time. But when we got home, the camera came out.

We go back in 10 days to get the new left hearing aid. For now, he's wearing the one that is too big for his ear. Then we go back the beginning of April for a hearing test. They want to give Aiden time to get used to wearing them and hearing with them.

He's done really good today. He hasn't taken them out or really messed with them at all.

Oh and on a side note, Sunday was World Down syndrome Day. We really didn't get to do our regularly scheduled activities since we were once again snowed in. Yes, that's right. The first day of Spring and we were COVERED in snow. But that's Oklahoma weather for you. Hopefully I'll get the tulips planted this week.

A Down syndrome Poem

An extra little chromosome,
that's all it is, you see.
Where all of you were born with two,
I was blessed with three.

Down Syndrome as most call it,
Trisomy 21, if you please.
This extra little chromosome,
Makes some differences, you see.

I love to run and sing and dance,
and tease my teachers too.
But when it comes to school work,
It's hard for me to do.

I need a little extra help,
as many of you do.
With all my friends and your support,
I know I'll make it through.

Just be my friend,
and I'll be yours.
It's as simple as can be.
Remember, you were born with two,
and I was blessed with three.

Author Unknown

Spring Break

This week, Aiden is on Spring Break. The temperatures have been sitting around 50* and it's been cloudy all week. Today was the first day that the temperatures have topped 60* and the sun came out. Tomorrow is also supposed to be nice, but Saturday the meteorologists are predicting a 4-letter word and it doesn't start with "r".

So, I thought I would take the little boy outside to play today. He hasn't had a nap and really could care less that he was outside soaking up some Vitamin D.

But here are some of the better pictures from our outing.

The Miracle Factory

Once upon a time, three angels were busily working in the miracle factory. They were responsible for wrapping up all the little miracles and sending them on their way. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped it with a delivery date and away it would go to the parents who eagerly awaited its arrival. Things usually ran pretty smoothly. One day, however, down the conveyor belt came a little miracle that made the angels pause. "Oh my," said the first angel "this one's um...well.. .different. " "Yes, he is unique" said the second angel. "Well I think he is quite special," said the first angel "but I don't think he will quite fit our standard wrapping procedures." And the second angel added, "And we know he's special, but will everyone else?" "Not a problem," said the third angel "obliviously a special miracle deserves extra special wrapping; and of course we'll send him off with our most heartfelt blessings. Then everyone will see how special he is." "What a wonderful idea!" replied the others. So they searched the shelves high and low for their finest paper, and their most delicate ribbons. When they were done, they stood back and admired their work. "Beautiful!" they all agreed. "Now for our blessings," said the third angel "for it is time for him to go." "I will bless him with innocence and happiness," said the first angel. "And I will bless him with strength to face the many challenges that lie ahead" said the second angel. "And I will bless him with an inner beauty that will shine on all who look upon him" said the third angel. Before sending him off the third angel, who was very wise, gently tucked a note inside.


And it said:


Dear Parents, Today you have received a very special gift....
It may not be what you were expecting,...And you may be disappointed, angry and hurt.
But please know that he comes with many blessings,
And, while there may be pain, he will bring you much joy
He will take you in a very difficult journey,
But you will meet many wonderful people.
He will teach you patience and understanding
And make you reach deep inside yourselves
to find a source of strength and faith you never knew you had.
He will enrich your lives,
And will touch the hearts of all who meet him.
He may be fragile,
But he has great inner strength.
So please handle him with care,
Give him lots of attention,
Shower him with hugs and kisses,
Love him with all your heart,
And he will blossom before your eyes.
His spirit will shine like the brightest star for all to see,
And you will know that you are truly blessed.
Author Unknown

Happy St. Patrick's Day

May the sun always shine on your windowpane
May a rainbow be certain to follow each rain
May the hand of a friend always be near you
May God fill your heart with gladness to cheer you.

Daylight Savings Time

This is one of the days I do not like. Time change. I really don't see a need for Daylight Savings Time. Sure, the government says it saves energy, but there is always something on in my house using energy.

What most people took forward to is the extra hour of sleep.

However, for a certain little boy....

It means he must wake up an hour earlier and get someone else up with him.

Aiden adjusts to DST the week before. He anticipates it even though he doesn't know about it.

This week, he has decided that we MUST get up at 4:30 am.

The good news is that since he refuses to take a nap anymore, he goes to bed earlier.

3 Going on 30

Every morning I take Aiden to school and walk with him to class. He wants to stop at the boy's bathroom even though there is a bathroom in his class room. He's obsessed with bathrooms.

And every morning, when we get to class, I give him a kiss good bye and tell him "See you later". However for the past few weeks, my kisses good bye have been met with resistance. I can't even blow the child a kiss bye. It's like he's embarrassed to kiss Mom bye in front of his friends.

So this morning, I blew him a kiss in which he gave me a look indicating that he was no longer a "baby".

I shook his hand.

An in other Aiden news, a few months ago I entered Aiden in a contest for a photo shoot with Jill Solomon, who does our local Down syndrome calendar. Jill emailed me this morning letting me know that Aiden won her "Fun in the Snow" contest.

She didn't post the picture I submitted of Aiden playing in the snow and I don't think I did either, so here it is..

Medical Rant

Thursday, Aiden got sick at school and I had to go pick him up. Fortunately, we live like right across the street from the school and I was there pretty quick. When we got back to the house, I called Dr. Pediatrician's office and made an appointment for 2pm on Friday. Aiden spent the day Thursday with things coming out of both ends. Friday was better, but we went to our appointment regardless.

Now, keep in mind, we live 45 minutes away from the office and traffic is horrendous on Friday...

We get to the office and go up to the check in desk. "I don't see an appointment for Aiden. Go up to the second floor and talk to them."

Okay....

Get up to the second floor and...

Receptionist: "Well, he doesn't have an appointment. Can you come back at 6:15 tonight to be seen in the after hours clinic?"

Me: Ummm, no. We have a 2 pm appointment. I didn't drive all this way due to a figment of my imagination. We want to be seen today."

Receptionist: We can get him in to nurse triage today and he can see a doctor on Monday.

Me: No, he has a 2pm appointment today. Not on Monday.

Receptionist: I can double book him, but you'll have to wait a few hours.

Me: No, he has a 2pm appointment with any doctor, I don't care who. If I wanted to wait a few hours to be seen, I'd take him to the emergency room.

At this point, Dr. Pediatrician's nurse comes out and says that Dr. L has a 2pm opening and he will be seeing Aiden. See, she knows.

Out comes Dr. L's nurse to retrieve Aiden. She sees that Aiden is 3 and wants him to stand on the scales. That won't be happening. He doesn't stand independent for longer than 2.5 seconds. So into the room to strip Aiden down, go over his ENTIRE history which is, by the way, ALREADY in the system located on the laptops all the doctors carry around. (This is why I HATE going to new doctors!)

The nurse and Aiden compare "zippers" and she asked which stomach surgeries Aiden has had. I didn't mention any stomach surgeries did I? Nope, those scars are all from heart surgery. She had to try 10 times to get Aiden's pulse ox. Aiden doesn't know her, so he isn't about to cooperate either.

In comes Dr. L.

"So this is the world famous Aiden? I went over his history and he has a lot of history for a short time."

Yep.

He checks Aiden over, listens to his chest, looks in his ears, attempts to look in the mouth.

Dr. L goes to get Dr. T.

Dr. T comes in asked about the bald spots, tells Dr. L about children with alopecia, checks out Aiden and diagnosed Aiden with a cold (ear pulling) and the stomach virus that is going around (oh yay me!). Asked about Aiden's allergies and how is the Benadryl working. Works really good at night, but not so great during the day. Prescribes Children's Zyrtec for the time being and if that doesn't work, Aiden gets to try out nasal steroids.

Take the prescription and leave. By this time, school is out and the one road I HAVE to go down to purchase carpet shampoo at a specialty store is down to one lane of extremely slow moving traffic. Spend an hour in Friday rush hour traffic to get to the pharmacy in the town in which we live...

Aiden's pharmacy is located down town. Now the town in which we live isn't big. It's small. Downtown consists of 1 stop light and about 50 businesses. The pharmacy is located next to City Hall. Since it's the first of the month, the city utility bills are due. Those who don't auto pay or mail in their checks go downtown to pay. There are no parking lots, just parking spaces in front of the businesses. There is no available parking spot for me to park in, so fine I'll drop it off Saturday morning and wait the 15 minutes to get the Zyrtec filled.

However, Saturday morning, the pharmacy was open but there was no pharmacist. Okay fine, I'll come back before 5pm when the pharmacy closes.

I got back to the pharmacy at 3:30pm and the pharmacy was already closed!

Huh? But the sign says "Saturday 9am - 5pm"?

I'll pick up his Zyrtec Monday morning.

Blow

The season for snot has come full force with a vengeance this  year. I should buy stock in Kleenex and Benadryl. And since I'm pretty sure we'll be discussing a lot of snot here on the blog, I made a new label - The Snot Chronicles.


 We have been teaching Aiden to blow his nose. He's figured it out pretty quickly and doesn't seem to mind doing it. The only problem is that he doesn't necessarily wait for a Kleenex to be in front of his face. He used his hand the other day at the grocery store. Yeah, that was gross.

The child is so congested I sent him to school the last few days doped up on Benadryl. This morning's dose didn't work. He threw up as we were walking into the classroom, fortunately, he still had his coat on and it didn't get all over his clothes - mine however are a different story. Then an hour later, his teacher called and said that more Pediasure had been expelled by the child and he was tugging at his ears. Which of course prompts me to drive up to the school and pick the child up and make a call to Dr. Pediatrician. Who by the way, is also out sick. Now, with me, if I'm really, really congested it messes with my ears. So hopefully that is the case with Aiden and not the viral thingy that is going around school.

We also had to cancel therapy again (he hasn't seen his PT in a few weeks to due illnesses on someone's part). I don't think he really minds, but ummm I have goals I want met.

And in other health related news...

The results from the Holter monitor came back and Dr. Pediatric Heart Electrician called (personally himself) with the results. Now if you know me, I don't like when the actual doctor calls - that means bad news. I would rather talk to the nurse. However, Dr. Pediatric Heart Electrician's office and I have been on the phone several times this week. Every day to be exact. Twice on Monday, once Tuesday, twice Wednesday and once today. (I'm seeing a pattern developing here...)

Dr. Pediatric Heart Electrician wants to see Aiden in the OU Clinic. Translation - we're going back to Oklahoma City. Not to fond of that idea, but what's a momma to do? They normally don't step in unless something is going on. Aiden will go to the Cardiac clinic there in May so that they can get him into their pacer system. Not sure how that is going to work out since Aiden's home transmitting device is linked to the Tulsa clinic.

The Holter results showed that Aiden hasn't had any tachycardia episodes since beginning the new medication. Which is a good thing. However, if his next transmission (later this month) shows any episodes, then another Holter will be ordered, Aiden will go to OKC earlier than May and we'll go from there. So, please pray that the next transmission doesn't send anyone to the ER with symptoms of a heart attack.

Oh, hearing aids.... Last week I received a letter of authorization from secondary insurance stating that everything was approved. YAY!!! Then yesterday I received a letter saying "Pending Pricing". Huh? Which prompts a call to secondary insurance. I give them the 2(!) authorization numbers. Apparently, the postal service delivered the "pending" letter way late. Person from insurance says call the provider and give them authorization #########. Okay, so I do.

Aiden's hearing aids are in the process of being made and we go pick up his yellow /blue swirled hearing aids on March 23. We will finally have a hearing Aiden.

Rock Climbing

For more Wordless Wednesday, click here

Spread the Word 2010

Something important needs said.

Tomorrow marks the second anniversary of Spread the Word to End the Word. I blogged about it last year. And once again, I'm blogging about it.

Do you realize how often the word is used? If not, click here. And that is just for today. Pretty sickening huh? And there are people out there who are using the word in a hateful, derogatory way. On purpose. To be mean.

I'm not joking. Throughout Facebook land, there are GROUPS that are promoting the use of the word in hateful, violent ways. Just search and you'll see what I'm talking about. Sadly, as soon as one gets shut down, another one pops up in it's place. It's like a bad rash. And one that no amount of cream is going to control. Sadly, other groups have had to step up and take the "policing of Facebook" to rid the social networking site of these hate groups. The good thing is that there are more families who have a member with an intellectual challenge than these "fanpages" have fans. Several thousand voices are heard and Facebook does eventually remove the group. But like I said, another pops up within minutes of one being shut down.

All it takes to stop the word from being thrown out there like a pair of dirty underwear is a conscious effort. Those who use the word in a derogatory way are scared of something. I'm not really sure what. There is nothing to be afraid of. Really there isn't.

It's a term used to describe those who have a harder time grasping a cognitive idea. They still grasp it. It just takes longer. You know, like those who CHOOSE to misuse the word.

This year, I encourage you to make the conscious effort. Take the pledge. The State of Oklahoma took the pledge.