Tiger Cub

The name of our local school mascot is the Tiger. The elementary school students are known as the Tiger Cubs.

This month, Aiden was inducted as the February Tiger Cub of the Month. I had to have Aiden back up at school at 1pm for the awards assembly and he was tired. He didn't get to have a nap because we had OT between school letting out and the assembly.

The assembly is kind of cool. Each of the teachers line up on either side of the aisle as each child walks down to receive their award. Aiden was in the Pre-K group and the last one to go through the line up to get "high five'd" and his ribbon. (Hopefully the video of that took....)

Lacking

I know I've been lacking in the posting department. We've been doing a lot of running around lately and I've started exercising to get back into shape aka... lose the baby fluff.

Friday night, I went out on a much needed Mommy Respite. It was a get together of friends from high school. We went to the Hard Rock Casino. No, I didn't do any gambling. I haven't done any gambling since the state legalized it. I just don't see any reason to give away money like that. I don't even play the weekly Powerball, and that is only $1. LOL!

Aiden wasn't too happy with me going out. He decided to be a complete butt head. I put him to bed early in which he decides to make himself throw up thinking that I would change my mind and stay home. I told him that I was going on a play date with my friends to which he responds with a resounding "NO" and hit my hands. I even told him it wasn't an overnight thing like last June, but he still wasn't hearing any of it. Thankfully, by the time I left, he was sleeping.

Monday, we took Aiden shopping after school. His Walmart girlfriends have been missing him. But we didn't get to see either one of them (one left early and I think the other one was at lunch) and we checked out at the automotive department because the truck needed an oil change. Aiden is fascinated with hula hoops, so I guess I'll have to get him one of those for the warmer weather. Granted they are way too big for him, even the smaller hoops, but hey.... I'm sure I can find a therapeutic use it.

Tuesday, I started my new workout routine. 30 Day Shred with Jillian Michaels. The routine is fine, I just don't quite see why I need to run in place while attempting to kick my own butt. And then she wants you to stand on one foot while holding the other with the opposing hand. Sorry, but I have about as much balance as a one-legged man in an a$$ kicking contest. Fortunately, the sofa broke my fall and my nose wasn't broken. Chris is off on Tuesdays, but I sent him to the doctor for his hormone replacement and to pick Aiden up and to Walmart for a scale. I don't need witnesses to my clumsiness. I don't understand why people go to the gym to meet a possible new significant other. Working out is not attractive. If I were looking for someone, I don't exactly think I want them to see me sweat, pant and pass out. Just saying....

Wednesday was cardiology day. It's been 6 months since the pacemaker went in. Aiden wasn't used to the echo tech and he didn't want to lay still for her. We had to have another tech come in and blow bubbles for Aiden while I pinned him to the bed. Dr. Pediatric Cardiologist said there were no changes and come back in 6 months. 6 months is the Aiden equivalency to one year. And we came home with the Holter monitor. One more hour to go with that thing attached to my child.

Oh and while we were waiting for the time of cardiology appointment to arrive, Aiden's teacher from school called. Aiden has been given the honour of Tiger Club member. Tiger Club member is translated into Student of the Month. Friday, there is an assembly at school and Aiden will get to be part of the assembly. I asked today if I could bring the camera and the video camera, so ummm be watching for footage and pictures this weekend.

This morning Aiden decided to put his pants on... by himself.

Sweater Vests

I just love sweater vests. I really do. Aiden on the other hand is going to absolutely detest them when he's older.

Never fails, whenever Aiden has to get his picture taken, he's dressed in a sweater vest. He's been wearing them since he was 5 months old and I found one at Babies R Us in the preemie section.

3 years later, he's still wearing sweater vests.

This morning I dressed Aiden in a long sleeve polo shirt before school. I got into his backpack and noticed a piece of paper stating that today he had class pictures. That meant I had to change Aiden's clothes.

And a new sweater vest came out of the closet.

Do My Feet Stink?

For more Wordless Wednesday, click here.

Aiden and His Warden...

AKA... Dr. Pediatric Cardiologist

When we went in to see Dr. Pediatric Heart Electrician, we stopped off at Dr. Pediatric Cardiologist's hallway. ( I don't really know how to explain the layout of the office, but each cardiologist has his/her own area of exam rooms. Maybe one day, I'll take the video camera. LOL!)

And since Aiden's 3rd Happy Heart Day anniversary was coming up, I needed a new picture. And Dr. Pediatric Cardiologist was happy to oblige.

A Sunday Meme

I so had to steal this from Posh over at Posh Totty

1. How old will you be in five years? ... If I'm going to be honest.... 41

2. Who did you spend at least two hours with today? ... Chris, Aiden and the dog

3. How tall are you? ... Not tall enough to reach anything... 5'4"

4. What do you look forward to most in the next six weeks? ... warmer weather.

5. What’s the last movie you saw? ... Amelia with Richard Gere and someone else.

6. Who was the last person you called? ... Chris, probably

7. Who was the last person to call you? ... Chris.

8. What was the last text message you received? ... No, from Kwisteena at Kwisteena's Kwaziness (yes, I text other bloggers, don't you?)

9. Who was the last person to leave you a voicemail? ... ummmm, I don't check my voicemail. I don't. Not unless the call is from a doctor.

10. Do you prefer to call or text? ... Depends on the situation

11. What were you doing at 12am last night? ... I believe I was sleeping

12. Are your parents married/separated/divorced? ... well, he's dead. so however you want to look at that situation

13. When is the last time you saw your mum? ... ummmm....... January something-ish

14. What color are your eyes? ... Brown.

15. What time did you wake up today? ... I woke up before 7.

16. What are you wearing right now? ... capri sweats, a cami, fuzzy pink socks and a Snuggie (backwards)

17. What is your favorite Christmas song? ... Little Drummer Boy

18. Where is your favorite place to be? ... shopping

19. Where is your least favorite place to be? ... Hospital - that should be obvious.

20. Where would you go if you could go anywhere?  Scottish Highlands

21. Where do you think you’ll be in 10 years? ... Are you kidding me? I can't plan that far out.

22. Do you tan or burn? ...I tan.

23. What did you fear was going to get you at night as a child? ... Freddie Kreuger. Don't ask

24. What was the last thing that really made you laugh? ... Aiden yesterday

25. How many TVs do you have in your house? ... 3 that are plugged in and operational. One in the garage that isn't plugged in, but Chris says is operational. And despite what Chris says, we do NOT need one in the bathroom.

26. How big is your bed? ... King sized

27. Do you have a laptop or desktop computer? ... PC, a MacBook and an iTouch

29. What color are your sheets? ... Beige.

30. How many pillows do you sleep with? ... Me personally? 4.

31. What is your favorite season? ... Summer.

32. What do you like about Autumn? ... Don't know anyone named Autumn

33. What do you like about winter? .... Spring follows it

February 14

On this day 3 years ago, I woke up to a snow storm.

On this day 3 years ago, Chris and I got back together and made our relationship stronger

 On this day 3 years ago, Aiden and I made our second trip to the OU Children's Medical Center.

On this day 3 years ago, Aiden was admitted into the Oklahoma City hospital which became our second home away from home.

On this day 3 years ago, I met the man who would save my child's life.

On this day 3 years ago, I was one day away from beginning a crash course in Pediatric Intensive Cardiac Care.

On this day 3 years ago, I puked due to nerves of what was only a few hours away for my 5 month old.

February 14 2007

Today.....

On this day, I woke up to a snow storm.

On this day, Chris apologized for waking me up letting the dog in.

On this day, I did NOT make a trip to the OU Children's Medical Center.

On this day, Aiden was NOT admitted into a hospital.

On this day, I thanked God for the men (and technology) who saved my child's life.

On this day, I am an expert in Pediatric Intensive Cardiac Care.

On this day, I got puked on and pooped on by a 3 year old during what was supposed to be a romantic dinner....

February 14 2010

HAPPY VALENTINES DAY!

Ch, Ch, Ch, Changes

Some of you know from Facebook, that I recently had a make over. Somewhat of the extreme type.

This was me before..... (in the pink)

I just always pulled my hair up. Once in a great while, I would straighten my hair. But that is seriously time consuming. I have really really thick hair.

Well, Tuesday I got tired of it. I went online and found the hairstyle I wanted. And made an appointment at one of the salons here in town. I haven't had a regular hair stylist in forever. I have gone through more stylists than anyone I know. Most stylists don't have the talent or experience to do my hair. I have been looking for someone I trust for over 5 years.

And so I went and met with Allison. She's been doing hair for over 10 years. I sat down in her chair and showed her the picture I printed out.

An hour later.....

I gotta go back later this week for colour and highlights.

Parent Support

Three and a half years ago, when Aiden was born - literally just a few days after , I was introduced to a woman, Joni Bruce. She is the executive director of the Oklahoma Family Network. That is a statewide group of families who share their stories and listen to moms of newly diagnosed children with special needs.

Joni had a son named Ian. And Ian passed away at 45 days old. She told me her story and listened to concerns I had regarding a premature delivery, being a single mom at the time and brought Aiden some real "preemie" clothes. Honestly, when you have a 2 pounder, the clothes at Babies R Us and Walmart are huge enough for the child to swim in. I couldn't find anything that would fit Aiden. I really couldn't. Through the Network though, other families who had smaller than average preemies (which according to the store is 5 - 10 lbs) and they offered up some outfits.

Joni had called another single mother of a child who had Down syndrome, Wendy. Wendy came up to the hospital and we talked. And I met Wendy's daughter, Hannah. Hannah was about 6 years old then. And Hannah was amazing! When Aiden underwent his first open heart surgery, Wendy came up to the hospital and sat with me during a lot of trying hours. She was there during the final attempt to take Aiden off of ECMO and prayed with me that everything would be fine and that we would not be making that trip to St. Louis for a heart transplant.

Several weeks ago, Joni sent me an email asking if I would be interested in becoming a parent mentor with the OFN. OF COURSE!!! Wendy and I still keep into contact and it has been nearly 3 years since we last saw each other. We are Facebook friends and follow each other's children's progress. Hannah has grown into an absolutely gorgeous young lady. (Of course, having a mother with Wendy's looks doesn't hurt matters either! Seriously, she's 10 years older than me and looks 10 years younger than I do. Yes, I'm jealous!)

Today was the day that I went in for my parent supporter training. I had to drive 2 cities south to find the facility. I so do not know the area other than driving though to get to the town to where my brother lives. Fortunately, I have a friend who lives there and called him. He talked me through the 10,000 stoplights and got me down the side street in which the library is located. (Why is it that libraries are located in the most obscure neighbourhoods?)

So, now I'm officially a parent mentor. Whoo Hooo!

There are also several other programs that I am going to look into. One is a Partners in Policies. Not really sure about what the entails, haven't read all of the information. And the regional director asked if I would be interested in sitting on the Families of the Hospital group. What that is... is talking to the local Children's hospital (you know, our other home) and discussing how to make the in-patient stays not so menacing. Good Lord knows I've been there enough to know what needs to be changed up there.

A Note from Aiden

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Hypocrisy

I've tried very hard to stay out of the political realm, especially on this blog. This blog is about Down syndrome and awareness. And how Aiden is more alike than different.

When the Presidential elections and campaigning were taking place, I tried hard not to voice my opinion. Sure, a lot of bloggers who blog about Down syndrome were praising Sarah Palin's Republican nomination as Vice President. After all, she walked out on stage to accept the nomination with her son, Trig, who has Down syndrome. She wasn't hiding him away behind stage away from the entire Republican National Convention. She was showing him off. (Well, who wouldn't? Children with Down syndrome are the most adorable little kids. But then again, I could be just a little biased... LOL!)

Governor Palin was "one of us". And proud of it...

During the few days following her acceptance, many friends asked if I were going to vote Republican because of Sarah Palin. I'm an Independent, I can vote however I see fit. I don't stick to just one party. They wanted to know what I thought about her having a child with Down syndrome. My response...

 "Good for her. But I won't be voting on the McCain/Palin ticket based solely on the fact that she has a child with Down syndrome."

I know a lot of people who did.

To me, having a child with Down syndrome may have made her a member in the "club" but that didn't qualify her as Second in Command of the United States. Interviews with her were mind boggling to me.

"But she has a child with Down syndrome and promises to be a friend in the White House for families with special needs". Yes, she has a child with Down syndrome. But is she really going to go through what I've had to go through? I seriously thought not. I'm relatively sure WIC isn't going to tell her "Well, he should be eating solid foods, he's 2." I'm pretty sure she isn't going to have to deal with an educational system who sees her child as a burden. Is she going to have to fight her insurance on more than 30 visits of comprehensive therapies for her child? Yep, that's what my insurance covers. 30 comprehensive visits. That means physical, occupational and speech combined. 4 therapies a week = less than 8 weeks worth of therapies. After that, it's out of pocket and falls on Medicaid.

My thought was "How is she going to understand what families of children with special needs goes through?"

Let's skip ahead a few months....

Barack Obama is appearing on the Tonight Show with Jay Leno. The show is pre-taped and broadcast several hours later. After the nightly news.

Obama makes a statement in which he compares his bowling score to "something like the Special Olympics."

Before the taping even aired, Obama called Timothy Shriver, head of the Special Olympics and gave an apology for his slip. And he even prepared a formal apology.

Within minutes of the faux pas, news agencies, social websites and online reports of the blunder were spreading like wild fire.

Sarah Palin made a public service announcement. (Unfortunately, the video is no longer available.) She made appearances at gatherings. She was standing up for Trig and his rights.

Fast forward a year....

The Wall Street Journal reports that the White House Chief of Staff, Rahm Emanuel used the term "f#cking retards" in a closed door private meeting regarding the Liberal stance on health care reform.

Obviously, the term wasn't used in the correct medical diagnostic sense.

Holy Hell breaks loose.

Timothy Shriver refuses to accept his written apology, saying he can't accept it. (But he did accept Obama's apology?) Several days later, the board of the Special Olympics accepts the apology.

Sarah Palin calls for Emanual's head on a platter by demanding he be fired.

Rush Limbaugh calls the Special Olympics summit at the White House a "retard summit".

Where is the fall out on this?

There is none.

Palin defended Limbaugh's use of the word as "satirical".

Satire = funny. And she's okay with that.

Excuse me?

How is offending a group of people satire? Why is it wrong for the Democrats to use the word, but perfectly okay for the Republican party?

And Limbaugh isn't the only Republican Palin has defended for use of the word in a flippant way.

There is Glenn Beck.With whom Palin works with.

Electrophysiology

Cardiac electrophysiology is the science of elucidating, diagnosing, and treating the electrical activities of the heart. The term is usually used to describe studies of such phenomena by invasive (intracardiac) catheter recording of spontaneous activity as well as of cardiac responses to programmed electrical stimulation (PES). These studies are performed to assess complex arrhythmias, elucidate symptoms, evaluate abnormal electrocardiograms, assess risk of developing arrhythmias in the future, and design treatment. These procedures increasingly include therapeutic methods (typically radiofrequency ablation) in addition to diagnostic and prognostic procedures. Other therapeutic modalities employed in this field include antiarrhythmic drug therapy and implantation of pacemakers and implantable cardioverter-defibrillators.
 A specialist in cardiac electrophysiology is known as a cardiac electrophysiologist, or (more commonly) simply an electrophysiologist. Cardiac electrophysiology is considered a subspecialty of cardiology, and in most countries requires two or more years of fellowship training beyond a general cardiology fellowship. Cardiac electrophysiologists are trained to perform interventional cardiac electrophysiology studies (EPS) as well as surgical device implantations.

Cardiac electrophysiology is a relatively young subdiscipline of cardiology and internal medicine. It was developed during the mid-1970's jointly by Mark E. Josephson, of the University of Pennsylvania School of Medicine in Philadelphia, Pennsylvania, now of Beth Israel Deaconess Medical Center at Harvard Medical School in Boston, Massachusetts, and Hein J. J. Wellens, of the Academic Hospital in Maastricht, The Netherlands.


Today, Aiden and I met with one of the electrophysiologists (Dr. Pediatric Heart Electrician) from the OU Children's Hospital. (You know, our other second home... LOL! I hate to joke about it, but I have to. I really do. Otherwise I wouldn't be able to deal with the situation.) And it took an hour. Why does cardiac appointments last sooooooo freaking long?) He was called in by Dr. Pediatric Cardiologist regarding Aiden's episode of ventricular tachycardia in November.

Well, his thoughts on the v-tach episode (since Aiden hasn't had another one since then) is that maybe the pacemaker picked up a false reading. Instead of being an episode of v-tach, he thinks that maybe the episode was really a 10 beat run of atrial tachycardia (a-tach). (Confused yet? V-tach is extra beats in the lower chamber - BAD! While a-tach is extra beats in the upper chamber - not so bad.) Aiden has lots of runs of a-tach, which is why Dr. Pediatric Cardiologist put Aiden on the sotalol a few years ago. However, the sotalol worked a little too well, causing the ventricular bradycardia (slow heart beat) resulting in the pacemaker.

Dr. Pediatric Heart Electrician is putting Aiden on a beta blocker to control the episodes of a-tach as he wasn't too happy about the quantities of a-tach Aiden is having. Granted, a-tach isn't life threatening like the v-tach, but still... needs to be controlled. The new medication (Don't ask the name, don't know. Pharmacy issue there, but I'll get into that later in the post.) takes a while to kick in and do it's job, so Aiden will return to cardiology on the 24th of this month for his annual check up and the ever stylish Holter monitor. We will also return to see Dr. Pediatric Heart Electrician in 3 - 4 months at either the Tulsa or OU clinic. I'm not opposed to driving to Oklahoma City. He's only in Tulsa once a month and those slots fill up quickly.

He also wants to follow Aiden's pacer readings at his OU office. Not sure how that is going to work out since the Tulsa pacer clinic is the one who gets the readings and then sends them to Dr. Pediatric Cardiologist who would then have to send them on to OU.

After the appointment, Aiden had a play date with his physical therapist. Since he pretty much walked all over the Heart Center (had to return the defective pacer reader also, located on a different floor), he really wasn't too interested in walking or standing at therapy. He wanted to sit a lot. Until it was time to leave and then Aiden was willing to climb all over things in order to go down the foam slide.

I also asked about getting the orthotist out for a new Sure Steps fitting. The PT agreed that Aiden does indeed need new "feet". By the time they come in, he will have outgrown his current pair.

Before we came home we stopped at the pharmacy for Aiden's new medication. I ran in and dropped the script off and then Aiden and I went to get lunch from one of the local restaurants. Then we went back to the pharmacy. Unfortunately, they don't carry the medication in stock. In fact, the pharmacist hadn't even heard of it and had to look it up. Then he had to call and order it. It should be in tomorrow morning. It's not one that has to be compounded, so that is a plus for me LOL!

A Neat Search

If you go to urbandictionary.com and do a search of your name, you come up with some pretty neat responses.

So, I typed in Aiden's name. The first response was for a punk rock bank out of Seattle. If you do a google image search for them, you come up some pretty disturbing pictures.

But while at urbandictionary.com, I scrolled down some and this was another response:

Aiden


Makes everyone smile where ever he goes. Will be remembered by many. Has a charming caring personality

A Mile in the Snow

Saturday, there was a status comment from the photographer who does the DSAT calendar. She wanted locals to submit a self-portrait in the snow for a contest to win a $200 photo shoot in the spring.

1) I don't do self portraits.

2) I haven't tried the new camera on the tripod.

3) Never tried the tripod in the snow.

So, I left a comment asking if the subject had to be one's self. Could it be the child of one's self? Jill said yes.

After I dressed and got the child dressed to go outside in several inches of snow, we went outside in the back yard. I'm not a snow bunny and neither is Aiden.

While we were out there.....