Christmas Shopping and Immunizations

DO NOT go well together.

First time mommies, heed this warning. Experienced mommies, SHAME on you for not sharing this important information. LOL!!

Aiden had to go in for his 15 month immunizations today. His appointment was at 9:00. I thought I would do the intelligent thing and finish my Christmas shopping. I was already going to be in Tulsa. And it was knocking two errands out in one day, meaning one less day I had to drag Aiden out into the cold weather. And Chelsea wanted to go to finish her shopping. (I absolutely refuse to go to any mall during the holiday season on a weekend. Nope, not going to do it; I'm not that stupid. I compare that to suicide.) So, Chelsea stayed home from school and went with me and Aiden today.

I should mention that Aiden gets "extra time" at Dr. Pediatrician's office. Aiden has a few extra issues that require extra time with the doctor. We NEVER get out of there in under an hour. And Aiden was due for his immunizations. The doctor visit went fine. The immunizations, did not. This was the first time Aiden threw that big of a fit. (Note to self - not all children with Down syndrome have a higher tolerance for pain.....)Oh and Chelsea notices that Utica Square is right across the street from Dr. Pediatrician's office.... "Can we go there?" Ummm, "No. Any store in the mall is cheaper." (And some of the stores in Utica Square are located at the mall, but the mall is still CHEAPER!)

Then I had to go get Aiden's formula at the pharmacy. Have I ever mentioned that Aiden's formula is only carried by one pharmacy and it is waaaaaaaaaayyyyyyyy over on the west side of Tulsa? I mean like almost to the river.

After the pharmacy, we head to the mall. At this time, Mr. Grumpy Pants is whining. I called my mom to see if she would be willing to babysit. She said she would, but I can't be that mean. It is decided that Aiden will go to the mall, but if he gets too upset I shall take him to Grandma's.

We arrive at the mall. I dislodge the stroller from the back of the Jeep. (At this time I insert the stroller only gets used when we have to walk for a long period of time and nothing else is available.) And the stroller makes a great shopping bag cart while at the mall. I can shove tons of bags including my purse, the diaper bag, and Chelsea's purse in the undercarriage.

I make Aiden a bottle by the time we got to the first store. There everyone is "oohing and ahhing" over the tiny bundle sitting in the stroller. And Aiden is occupied with the lights in the store. Aiden finished the bottle of formula before we left the first store.

On our way to the second store, Aiden no longer wants to sit in the stroller. He wants carried. Have you ever attempted to carry a child and maneuver a huge freaking travel system stroller through the mall?

By the 4th store, Aiden is getting tired, so into the stroller he goes. And he goes to sleep. By the 5th store, guess who is awake, screaming, and wanting another bottle? Yep, you guessed it. Oh and if you thought that it wasn't possible to be any crankier than a child waking up from a nap, you are soooo wrong. Add a child who now is grumpy from immunizations. (Keep in mind that my child has now been stuck with a needle 34 times this week alone.)

We leave the mall and decide to grab something to eat on the way home. Little boy falls asleep with a tear in his eye. When we get home, little boy wakes up not happy. I fix him another bottle and rock him in the recliner. Little boy falls asleep until Mommy stands up to place little boy in bed.

Meanwhile I have Christmas gifts that need wrapped before people get home. Little boy refuses to take a nap until he finished off yet another bottle.

Lesson learned: Immunizations and Christmas time do not like Mommies.

Let's Try Something New

Every day I want to do a themed post. Today being Friday, we are going to do "Friday Funnies".

Yesterday I was reading Rhett's Journey and found this absolutely hilarious.

Taken Out of Context

It seems as though the word "retard" is a hot topic these days in forums and such. Mostly it is someone asking if the word is offensive. People use the word on a daily basis to mean someone is acting stupid. It has become so common that most people say it without really thinking.

However, have you really ever known the definition of the term "retard"? According to Webster's Dictionary, the term means

retard[1,verb]retard[2,noun]en retard

Main Entry: 1re·tard
Pronunciation: \ri-ˈtärd\
Function: verb
Etymology: Middle English, from Anglo-French or Latin; Anglo-French retarder, from Latin retardare, from re- + tardus slow
Date: 15th century
transitive verb
1 : to slow up especially by preventing or hindering advance or accomplishment : impede
2 : to delay academic progress by failure to promote
intransitive verb
: to undergo retardation

synonyms see delay
— re·tard·er noun

No where in that definition is the word or synonym "stupid". So why do people confuse the two words?

My child is mentally and developmentally retarded. That is part of having Down syndrome. But does that mean he is stupid? No, Aiden is very smart. He's just slower to do things than most kids his age.

Yet people daily confuse being retarded with being stupid or doing something goofy. Want proof? Do a search of images for the word "retard". What did you come up with? Pictures of people making stupid faces? How about those people who also have Down syndrome? Did you see those also? Or did you even notice that?

Would you use the "N" word to describe people of the African race? Or what about the word "wh*re" to describe all women? Why not? Because those words are offensive? The "N" word means to be ignorant or uneducated. Are those words fair assumptions of an entire group of people? No, they are not. However the term "retard" is acceptable in today's society. Why is that? It is just as offensive.

Everytime you uses the word "retard" to mean stupid, do you realize that you are offending the families of 350,000 people in the US? I bet you didn't think about it like that. So the next time one of your friends do something stupid, think about it before you call them a "retard". Even if someone who knows a child with Down syndrome doesn't hear you, someone IS hearing you say it. Be it your child or the neighbour. The person who hears you take this word out of context, will start saying it. And so on.......

It is up to society to change the perception of what it means to be "retarded". If you still continue to use the word to imply "stupid", does that mean we get you call you a "retard"? Obviously you haven't gotten it and seem to be delayed..........

I Don't Care About the Tree, Give Me PRESENTS

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Paroled

Dr. Secondary Cardiologist came into Aiden's room this morning and listened to Aiden's heart. Everything sounded good and reminded me to follow up with the dig level and holter monitor next week.
I asked about the next cath procedure. Instead of going through his leg, a small incision will be placed in Aiden's neck and the wire ran to his heart that way. If that doesn't work, then an attempt to go through the liver. Now if that happens, instead of Dr. Cardio-thoracic/general surgeon from this hospital doing it, Aiden will either go to OU or we'll bring Dr. Cardio-thoracic surgeon from OU to Aiden. As the pharmacy was preparing Aiden's medication to bring home, we got the discharge papers ready. I turned off the monitors and his nurse removed the IV. I got Aiden dressed and discovered that the blanket I took Aiden to the hospital with is missing. This isn't a generic blanket. I had this one specially made for Aiden, his name is embroidered on it. And I know that the spelling of Aiden's name isn't common. So whoever took it, what were you thinking?

Anyhoo, Aiden is home and happy to be playing again.

Thank you to everyone who has prayed for Aiden during these last few days. Also, if you managed to read the entire saga regarding Pediatric Cath Lab, you ROCK!!! Just remember that the next installment will be the week after Christmas, so be sure to check back for more exciting news.

And Now for the Conclusion of "Pediatric Cath Lab".....

Previously on A is for Aiden: Aiden's Heart, Aiden was ordered to undergo a cath lab for his pulmonary hypertension. We sat through 4 hours at the hospital for pre-op lab work, signed paper work for a heart cath and possible nitrous oxide, and talked to numerous hospital staff members. We were told to have Aiden at the hospital at 12:30pm for surgical admit.

So, after several attempts to keep Aiden awake normal than usual, he decided to fall asleep at 7:30 last night. He woke up at 1:00am for a bottle. He woke up at 2:30 for some unknown reason, but he wasn't happy. He went back to sleep and woke up at 7:55am. That meant I had to force feed a child who doesn't want to eat directly upon waking up. No, he wants to play first. I tried reasoning with the child. I told him that he himself heard Dr. Secondary Cardiologist say that after 8:30am, no more formula and then he could have the hated Pedialyte before 10:30. Well, shortly before 10:30am, I attempted to give the child a bottle of Pedialyte. That was to no avail. Therefore, the screaming and crying and sad puppy dog eyes started promptly at 11:00 am. How does one reason with a "fed-on-demand" child who smacks his lips and a bottle magically appears in his hands?

On the way to the hospital, we stopped at a drive-thru fast food restaurant and ordered lunch to eat on the way there. Lunch was finished as we were pulling into the surgical parking area. If you remember from the previous post, this hospital has horrendous parking. Finding a place to park at the mall on Black Friday is a much easier task. We managed to squeeze the SUV in between two trucks. (We live in Oklahoma, trucks are pretty much mandatory for every family.)

Once we enter the hospital, we are like mice going through a maze. Turn left here, turn right here, follow this curve. I must mention that the hospital is in the shape of a heart from an aerial view. We pass Radiography, Endoscopy, Labour and Delivery, and various other departments to get to Out Patient Surgery. There we wait for an hour before being taken to the private, wait even longer, room. Oh, and all this time, the child who has not had a decent meal all morning is still screaming.

Vitals were taken and we were given a pass card that has to be produced at any time you want to inquire about the patient. And we are still waiting. And waiting. And waiting. We waited for an hour AFTER surgery time. Yep, surgery was supposed to be at 2:30pm, however we were not retrieved until 3:30pm. We walked to the other side of the hospital from where we originated. I carried Aiden the whole time. We get to the second floor and the cath nurse belonging to Dr. Secondary Cardiologist took Aiden from my arms and went through the double doors. We go up the the fifth floor where the PICU waiting room is.

Now the last heart cath lab lasted 45 minutes. I was told an hour and a half. Well, this time, I figured about an hour. Chris's mom called, "How is the baby?" I told her that we were still waiting. Another call at an hour and a half. Another call 1 hour and 55 minutes into the procedure. I myself was about to use the inquiry card as I am now getting worried. About that time, in walks Dr. Cardiology, Dr. Secondary Cardiology, and Student Dr. Cardiology.

"Well, we weren't able to cath him." Huh, what? Dr. Cardiology says, "Oh, Aiden is fine." and she sits down. "But we weren't able to cath him. He was cannulized during ECMO. And his veins are full of scar tissue." She shows me a picture of his belly and all the little veins.

All those little veins are scarred from ECMO. And they cant reach the main vein that goes to Aiden's heart. They tried the artery in both groins. They could get to the arteries, but no luck on the vein.

So then the idea of sticking him in the neck to feed the wire through those arteries. Guess what? That didn't work either. My poor child has become the human pin cushion. I joke you not, one side of Aiden's neck was stuck 10 times, and the other side was stuck 19 TIMES!!!! How do we know this? We counted. And here is proof:
and . Thought I was exaggerating, didn't you? That is a total of 32 needle sticks to my child in an hour and 15 minutes.

Well, now the plan of action is to take Aiden in for a holter monitor and a dig level check next week (per Dr. Electro-physiologist's orders as they raised the amiodarone and digoxin medications). And Dr. Cardiologist will call with the results. AND.......... yep, and. And we schedule ANOTHER cath lab the week after Christmas. They will try again. If that doesn't work, a small incision will be made in Aiden's neck to get to the artery and hopefully the heart. IF that doesn't work, a month later, we will get to go back in and Aiden's liver will be attacked to reach the heart.

By the time, we got back to see Aiden he was pretty easy to locate. Just follow the screams of hunger. The child downed 9 oz of Pedialyte. We asked the nurse to have pharmacy send up his formula. Aiden drank another 3 oz of that. His sats weren't doing well, until I made him sit up and cough all the gunk from being tubed. Aiden fell asleep peacefully and hopefully will sleep through the night. If he does well throughout the night, he'll get parolled in the morning.

And since his next reservations have been set for after Christmas, I asked Dr. Cardiology if he was cleared to go out of state for Christmas. She said as long as he wasn't flying and we were still within range of getting him to one of the two designated hospitals here in OK.

Pediatric Cardiac Cath Lab, Part 1

Previously on A is for Aiden: Aiden's Heart, Aiden had an echo that came back with bad results. Dr. Cardiologist ordered Aiden to undergo a cardiac cath lab.

That sounds so much like the beginning of a soap opera, doesn't it?


Anyhoo, Aiden was up at 2:20 this morning. I don't know why. My alarm wasn't set to go off until 5:30. That's extremely early for a SAHM, huh? Even Harley was still asleep. I managed to get a quick shower and put a little makeup on.

I got Aiden dressed and his diaper bag ready. Chris got up to go with us. Of course, the weather was cold and raining. I took my purse and diaper bag out as Chris was warming up the Jeep. (Have you ever sat on cold leather first thing in the morning? That is NOT good!) I took Aiden clad in his coat and a blanket. We pulled out of the drive way and got to the end of the road. Only then did I remember that both moms would be calling and my cell phone was still on my nightstand. So, back we came and into the house I run.

We are supposed to be at the hospital at 7:45. Knowing Tulsa rush hour traffic, we were cutting it close. We got to the hospital and checked in at 7:42. (Oh, did I forget to mention that the hospital has horrendous parking? And we had to drive around twice to find a spot?) Chris went and got hot chocolate, coffee, and an apple cinnamon bagel (if you haven't tried one, highly recommended). Aiden wants to drink my hot chocolate instead of his formula, which hot chocolate contains just a tad bit too much fat.

We get called back to admitting. There he gets his green bracelet with his name on it. By the time we are finished in admitting, the waiting area is packed full and we lost our seats. By this time, I haven't gone to the bathroom in nearly 3 hours. Chris finds the men's room and when he returns, informs me that the women's room is closed for cleaning. Hospital bathrooms, for some reason, take at least an hour to clean. We get called back to the pre-op triage. There, I know they have a bathroom for urine tests. I took the only opportunity I knew I was going to get for a few hours.

Finally the assistant to Dr. Happy Drug comes in. She remembered us from his first cath, in January. (I don't remember being that mean then.) So, we filled out all the information regarding drugs Aiden is taking and how he has reacted to previous general anesthesia. Dr. Happy Drug's assistant leaves.

Then a nurse comes in to hand us all the paperwork and "Welcome to the hospital" pamphlet. And she is amazed at how well Aiden is playing. Well of course, he's an old veteran at this. She also called over to the cardiologist's office to get the results from last week's echo, as Dr. Happy Drug will need this.

Then another woman comes in with Emla cream. This is the only hospital we have been to that has this. This is a wonderful creation. It numbs the area where the vampire people are going to stick my child to draw blood. She numbs both arms.

25 minutes later, in comes the vampire. Only this one is smart. She is going to get an assistant to help hold Aiden down. Yep, in one stick, 2 mL are drawn. Aiden gets a blue bracelet that God forbid he can remove, otherwise he will have to get stuck again in the morning.

After two hours at the hospital, we are free to go to the cardiologists office. Which is in the same complex as the hospital. However, there is no thru passage from the hospital to the dr offices. We get to the cardiologists office (an hour early) and we're talking to the receptionist and Christy (the appointment maker). Dr. Secondary Cardiologist's nurse comes out and gets us. Aiden gets weighed, blood pressure checked, and sats checked. The first sats read in the upper 70's, so I put his sock back on him and got 99 and 100 readings. Also, Dr. Secondary Cardiologist's nurse informs us that the lab work could have been done tomorrow while Aiden is under the influence.

Dr. Secondary Cardiologist comes in. He is the one who is going to do the cath procedure tomorrow. He asked how Aiden has been doing since he last saw him in May when the a-tach was getting out of control. And he handed me a script for Aiden's amiodarone. Dr. Cardiologist is raising his amount for the second time in a week based on what Dr. Electro-physiologist said. Chris asked what all the cath involved. Dr. Secondary Cardiologist explained about the wire and checking all the pressures that way to get an accurate reading. Then Chris asked about the valves. I said that was for Dr. Cardio-thoracic surgeon to decide. We don't need to be figuring that surgery out now.

Dr. Secondary Cardiologist asked if anesthesiology gave us a time. I had been hoping for early morning that way I could keep Aiden up most of the night and let him sleep in the morning without having to keep food away from him. WRONG!!!!!!!! Instead, the procedure is to begin about 2:30p. Aiden can not have a bottle after 8:30am and a bottle of Pedialyte after 10:30a. Aiden HATES Pedialyte.

Since the cath lab is so late in the afternoon, guess who has overnight reservations?

And so are the days of our lives............. HAHAHA!! Stay tuned for the dramatic conclusion of Pediatric Cardiac Cath Lab.

Our Christmas Tree

In the obscure chance that I might have some normality this weekend, the tree came out. And it is mostly decorated, I still have to put the angel on top.



Now for the fun part: to keep both Aiden and Harley from destroying the tree before Santa gets here.

Please God

Grant me the strength to deal with the lab technicians trying to get enough blood from Aiden for his pre-op tests.

Grant me the strength to not yell at the anethesiologist.

Grant me the strength to not look at his cardiology team as if they grew an extra head.

Grant me the strength to not laugh when I am asked if I want to see the cath proceedure video.

Grant me the strength to wake up in the morning and take him to 4 hours at the hospital and not say "Screw it".

Which is Worse?

The surprise "We're admitting you into the hospital" or the anticipation of knowing you are going to get admitted? I absolutely detest the waiting.

On the other hand, we've never had the surprise either. If Aiden has to go to the emergency room, I automatically know that he is getting admitted. That is just a "no brainer". But I also know that at anytime, any one of his doctors could admit him.

With the last cath proceedure, I half expected to come home later that day. I learned my lesson though. His right foot was cold and the nurses couldn't get a pulse reading on doppler. For this next cath proceedure, I'm full anticipating staying in the hospital awhile. It's not because Aiden doesn't handle anethesia well. It's because we have never had to go through a pulmonary cath. I don't want to know what his levels are. But I know I must do what is best for Aiden. And if that means admission, so be it.

A Band of Angels

Look over Jordan, what do you see?
Rochester teen defies stereotypes as school makes run for football glory
November 11, 2007

BY MITCH ALBOM

FREE PRESS COLUMNIST

Friday night, at a high school football playoff game, it was damp and cold, and the players bounced on their toes to keep warm. Near the Rochester Adams bench, amidst all these bigger teenagers, stood Jordan Kidder, barely five feet tall, with glasses and braces, a school cap, a jersey, a varsity jacket and a job to do.

"Watch this for me, Jordan, OK?" a player said, running over.

"OK," he said.

"Some water, Jordan," another said.

"Here," he said, handing over a bottle.

"How's it going, Jordan?" another said, slapping his hand.

"Going good," he said, slapping back.

As the game went on, he didn't throw a pass or make a tackle, he never pulled on a helmet, but when the Highlanders scored, he clapped his gloves hard, and when the kicker needed a tee, he made sure it was there, and when the team went to halftime, he went with them, getting the guys whatever they needed, encouraging them to keep fighting.

As student manager, Jordan Kidder, 18, has a unique job. As a young man with Down syndrome, he has a unique life. He doesn't quite look like the guys on the team, isn't quite as big, doesn't speak the same way, maybe moves a little differently. And in high school, where being "different" can be a curse, you might think the other players have been teaching him something.

Truth is, he has been teaching them.

"I didn't really know what to make of Jordan when we met," admits Josh Renel, Adams' star running back, who now picks up his buddy every Tuesday en route to team dinners at Buffalo Wild Wings, "but Jordan has shown me you can't really judge a person by what he looks like. He's just like any one of us."

The story behind his name

Just like any one of us. That sentence would have been laughable 18 years ago, when Cynthia Kidder was pregnant. Tests showed the likelihood of serious problems, and it was politely suggested she terminate the pregnancy. In fact, today, when a prenatal diagnosis is given of Down syndrome, studies suggest up to 90% of women choose to do just that.

Cynthia refused.

"If I have a child with problems," she said, "it's still my child."

At the time, she was confident. She had a big job in New York, she had two other sons. She could handle it. But when the child arrived, she recalls, "People didn't say, 'Congratulations.' They said, 'So ... I hear you had the baby.' "

A dire life was predicted for her son: heart defects, smaller limbs, almond-shaped eyes, low muscle tone, learning disabilities. All the typical stuff with Down syndrome, a chromosomal abnormality that usually affects cognitive ability, physical growth and facial appearance -- in other words, how you think, how you grow and how you look. He'll never read, Cynthia was told. He'll never do math. He'll never do anything that's not repetitive behavior. A doctor told her the "good" news: There were two Down syndrome kids he knew "who worked at a McDonald's, wiping tables."

Cynthia was drowning. She called a religious aunt and asked for support. Somehow the spiritual "Swing Low, Sweet Chariot" came up in the conversation, and the line, "I looked over Jordan and what did I see ... a band of angels coming after me ..."

The next day, she woke up feeling better.

She named her baby Jordan.

And from that day forward, the kid has been defying predictions. He learned to read -- slowly, but he did. He learned to do math and science. He went to classes with other "normal" kids -- at Cynthia's insistence, and with help from the Rochester school system -- and he made his own friends with an amazingly open and happy heart. One time, when Jordan was playing tag with some fellow grade-schoolers, Cynthia noticed they kept telling her son he was "it." Worried, she quickly intervened, lecturing the boys on the rules. But later Jordan told her, "The first part of recess was more fun. I got to be 'it' the whole time."

Cynthia and Jordan's father held Jordan to the same standards as their other children. They found teachers who would do the same. As a result, Jordan has grown into a pretty typical teenager: He listens to Zebrahead on his iPod, watches pro wrestling (his favorite is A.J. Styles), scarfs down hamburgers and pasta, sings in the choir, and is even on the swim team. OK, so he almost always finishes dead last. What's important to him is that he's part of things.

Besides, at one swim meet, he finished next-to-last. You never saw anyone as happy with that result as Jordan was.

The story behind his role

But what Jordan really loves is the football team. He has been a student manager for four years, starting with the freshman squad and working his way up. He handles the equipment, distributes the water and consistently raises team spirit. The first day, he admits, "I was nervous. But I got over it."

Why were you nervous?

"I'd never been on a football field."

Were you worried they'd tackle you?

He explodes in an infectious laugh that could melt the hardest heart. "No. But one time, against Troy, I ran on the field for a tee, and they all came flying by me -- whoosh, whoosh."

Did you go down?

"No," he laughs again. "I went in between them."

Kids with Down syndrome are often described as having an almost supernatural effect on those who know them, a certain sweetness, innocence and nonjudgmental persona that, for want of a better phrase, chokes you up.

Tony Patritto, the Adams football coach, has that look often when he speaks about Jordan. Like so many others, he had never dealt with a Down syndrome kid, and his instinct, at first, was to pity and make concessions. Except Jordan kept coming late to science class. "I called him out," Patritto says. "I took a chance."

Jordan responded. And he has been part of Patritto's world ever since. There's a team gesture his Highlanders players use, a shark-like hand-to-the-forehead that signals "fins up" for defense. Whenever Patritto sees Jordan, in the hallway, in the locker room, "he gives me this huge grin and makes the 'fins up,' and it just makes my day."

When you ask Patritto what Jordan's duties are as team manager, he answers "to be with us." When you ask Renel, the star running back, about Jordan's popularity, he laughs and says, "You cannot not like him." When you ask Jordan -- who shaved his head with his teammates when the playoffs began -- what he will miss most when football ends, he says, "My friends."

And when you ask Cynthia Kidder, who now runs a national Down syndrome organization called Band Of Angels, dedicated to celebrating and supporting those with the disability, what she thinks about her son graduating next spring -- and planning to go to college -- she recalls how teachers once told her that by the fourth grade, Jordan might be able to make macaroni and cheese.

"I told them, 'He lives in my house, I can cook for him. But I'm not a teacher. Can you teach him?' "

They have. And he has taught them. About stereotypes. About patience. About dealing with real problems and still maintaining an explosive laugh and a sly sense of humor. When Jordan was told a Free Press photographer was going to take his picture, he asked, "Can they take one of me and the cheerleaders?"

Adams won big Friday night, capturing a Division 2 regional championship, 49-10, over Farmington Hills Harrison. If the Highlanders (11-1) win two more games, they will be state champs, the Promised Land for a high school football team.

Then again, they may already be there. You look over Jordan and what do you see? A big-hearted teen flanked by a band of angels -- teammates, teachers, family, friends -- all loving someone "different" no differently than they love themselves.

If that's not the Promised Land, what is?

Contact MITCH ALBOM at 313-223-4581 or malbom@freepress.com. Catch "The Mitch Albom Show" 5-7 p.m. weekdays on WJR-AM (760). Also catch "Monday Sports Albom" 7-8 p.m. Mondays on WJR. To read his recent columns, go to www.freep.com/mitch. For more info on Down syndrome go to www.bandofangels.com.

All Night Long

Yep, you guessed it. Aiden was up all night long. He woke up a little after midnight. We cuddled on the sofa. 2:00 am, he was screaming and screaming and screaming. I tried suction. I tried Vicks. A bottle was a no-go from the beginning. Instead, he wanted to lie on the floor. Without any toys. Harley is whining because he wants out of his crate. But Aiden wants nothing to do with the dog in the middle of the night.

The alarm clock goes off at some unGodly hour. Oh _____, it's Black Friday. I don't want to get up to go anywhere other than bed. Harley is once again whining. Aiden is whining also. Chris gets up, the dog and Aiden are quieted.

At 6:30 this morning, Chris gets back in bed. He had let the dog out, gave Aiden a bottle, and went and did our "After Thanksgiving" shopping. Unfortunately, Chris has to get back up and out the door at 7:30 to go to work.

Aiden wakes up at 8:00. The dog goes outside. Laundry and dishes are started. Christmas gifts are hidden to be opened at a later time. And it is 21 degrees outside.

And all this after a day of going to two stores to buy necessities, picking up Chelsea's best friend, going to Chris's mom's house, eating a huge dinner, and coming home late.

To Our Readers

Awesome Graphics at pYzam.com

Aiden's Designer Genes

I want to take this time to thank Becky Bowen for her artistic creativity. She made this shirt for Down syndrome awareness. The three catapillars represent the triplicate of the 21st chromosome. This shirt is from her "Go Your Own Way" line.

A Heart Stopping Call

"Stephanie, we need you to bring Aiden to the hospital" there was a long pause, "Monday morning. Take him there first. So that way you don't have to wait for 4 hours."

This was the call I got an hour ago. When that first part was said, I wanted to drop dead. I'm not ready for Aiden to go to the hospital. I haven't came to terms with the fact that he has to go to the hospital yet.

Once I realized what Christy was saying, my heart started beating again. I still have to cancel appointments for that day.

And Christy is going to try to get Aiden in as early as possible Tuesday morning. The last cath lab was two hours late. Aiden had not eaten anything in almost 8 hours. And he was not happy about it. He told everyone!! The nurses in the OR waiting room were not happy about this screaming child. One kept coming in every 15 minutes telling us to keep him quiet. Finally, I told one of them to get him a bottle instead of a pacifier and he would stop screaming. The nurses stopped coming in then.

So, we play the waiting game and try to enjoy the Holiday weekend.

I Don't Know Where They are Going, but I'm Going Also

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Bad News and Worse News

Aiden had a cardiology appointment today. We left the house and went for xrays first. Xrays went pretty quickly, the admitting person was standing there waiting to take us back to give him his bracelet.

After xrays, we went straight to the cardiologist's office. There we talked to the receptionist for a few moments, while she got his chart ready. Then we went in for his echo. This is where things went down hill.

First, it took 20 minutes to do the echo. This should have been my first clue. We never spend that long during an echo. She looked at both the mitrial and tricuspid valves. For a really LONG time.

Then we go to the exam room. There the EKG is already waiting for us. This should have been my second clue. During the EKG his heart rate was up in the higher 170s. D'oh!!!!!

This is where things start going down hill and FAST.

The cardiologist comes in and says that Aiden's atrial tachycardia is back and she doesn't know why. So she wants to schedule a cath lab. Well, damn all that is unholy! Dr. Electro-physiolgist from OU (where Aiden had his heart surgery) holds a clinic once a month in Tulsa, so we don't have to go to OKC for that.

She says that Aiden's mitrial valve is leaking, which we already knew. Then she says that Aiden's tricuspid valve is narrowing.

THEN she says that Aiden's pulmonary hypertension is getting higher and she wants to have that looked at during the cath lab.

We got to talking about the valves. Aiden will have to have surgery to "hopefully" repair them. Sometime soon. However, due to all the complications during his heart surgery, she doesn't know if Dr. Cardio-thoracic surgeon at OU will do the surgery. We may have to go to Chicago or St. Louis. (These are the hospitals that do heart transplant. See where I am going here?)

She ups two of his 4 medications to maybe help with the tachycardia. She also said that we'll know more next week after talking to Dr. Electro-physiologist about treatment, whether surgery will be required or to change medications.

She handed me the checkout slip and ordered cath lab for our next appointment.

She almost admitted him today, but since there is nothing we can do until we talk to the team from OU, she sent us home. We'll be admitted NEXT WEEK!!

Prayers for Rhett and Parker

Both of these little guys have been admitted to the hospital. Rhett was admitted for dehydration and Parker needed a blood transfusion. You can follow Rhett's story here and Parker's story here

3:00am Play time

Chris came to bed at 3:00 this morning. And he brings Aiden with him. I asked why Aiden was not in his bed. Chris said because Aiden was awake and wanted to play. Sure enough, Aiden was all happy and laughing.

So I get out of bed and bring Aiden into the living room. I get him a bottle ready and we cuddle on the couch. He drank the bottle and he was still tired. But I could tell that he still wanted to play. By this time, Harley had heard Aiden's laughter and was whining to be let out of his crate. Well, if I had let the dog out, Aiden would never have gone to sleep. Instead, I left the dog in his crate and pulled out Aiden's playmat. Aiden played until 6 this morning when he finally took a nap.

Aiden's morning nap was over with at 7:30.

Oh, the joys of not sleeping all night.

And We Have a Name

First, I want to thank everyone who voted in naming the puppy. The names we decided to go with were names that seemed to fit his look.

After spending a week and training the little guy, a name has finally been decided. His name is fitting for his personality, I think.

So, the name we are going to go with (besides "Puppy" which is what we have been calling him all week), is one that some of you will find funny. Although, I don't want to make anyone mad.....

He has an exhaust leak (OH DEAR GOD! save me from this one), he rumbles when he runs through the house, and he has an addiction to cigarette butts.

So without further ado, I give you..........................

Harley Milo

Meeting Our Neighbours

We live in a small town and I really don't know anyone short of Chelsea's best friends family. There are a few moms in town from one of my online (non T21 related) groups, but we haven't had the opportunity to meet yet.

Well, tonight I took the puppy outside to potty. The guy who lives across the street hollered if I had heard him yell at a kid who was bullying his son. Of course I didn't. With the television, the puppy playing, the phone ringing, and Aiden talking, I don't hear much that happens outside.

So, he proceeds to tell me that he and his wife usually get their granddaughter on the weekends. And how this weekend they didn't get to watch her as his wife had dental work done yesterday. At this time, Aiden starts to talk really loudly himself. I came in and took Aiden outside while the dog was finishing up business.

Well, the neighbour and his preteen daughter come over to meet Aiden. And he asked how old Aiden was. When I said, "14 months", I could see the confusion on his face. I explained that A was premature, had heart issues, and also had Down syndrome. I am used to having to explain that.

What I am not used to is the following response. "Well, he'll do just fine. He will be ok" WOW, someone who gets it! Do you know how odd that is? Someone who doesn't have a family member with T21 and understands. No "I'm sorry". No "Oh". No stupid response. No explaining what Down syndrome is.

Are we finally getting the word out?

A Quiet Evening at Home

This is a rare moment anymore. Chris is working security for the Ludacris concert tonight and Chelsea went with him. Aiden, who was up EARLY this morning, is sleeping soundly. And the puppy, who has chewed incessantly on my feet all day, is also sleeping.

The Oklahoma/Texas Tech game is on (which I'm not supposed to watch until Chris gets home). But he has the DVR set to record both the game and NASCAR. And when both receivers are recording, I'm stuck watching one or the other. So, instead of hearing either as to not ruin the outcomes, here I am listening to the iPod. Granted, only one ear bud is in just in case one of the babies wakes up.

I thought I would talk about Down syndrome support groups. There are several online and in real life that we are members of.

There is DSAT, our local in real life support group. We meet once a month to learn new and exciting things. Thursday was our meeting, but Aiden was really not feeling well, so I didn't get to go. Which I really wanted to as the highlighted discussion was about trust funds for our kids. My ob/gyn, Teressa, told me about this group when I first got Aiden's diagnosis. My first meeting was in August of 2006, right before A was born. Of course I missed the next few meetings as Aiden was born and spent a month in the hospital.

The next few support groups are on line. The first one I joined was the T21 Online group. There, I met a few really wonderful moms who are just amazing. Pam, the voice of Rhett's Journey, I met through there. In fact, that was the first blog I had read. I had inquired on the forum as to the "good, bad, and ugly" of heart surgery. Pam had graciously lead me to her link of Rhett's surgery. And I remember thinking as I read his story "This is what Aiden's surgery will be like". Sure enough....... Today, Pam and I call the boys "medical twins".

The next set of groups, I found at the Cafe Mom website. There is the Raising Children with Down syndrome group. I just recently became a moderator there. Then there is the Down syndrome group. There I have met a few moms in my area who don't get to attend the IRL meetings.

And just the other day, I started my own support/discussion group over at Delphi Forums. I have been a member of several forums there for years. However, there isn't a group for Down syndrome. So I started Blessed with a Little Something Extra. Right now, it's still under construction, but you are welcome to come in and take a look-see. And join if you feel so inclined.

I "borrowed" a poem from Becky Bowen called Can You Tell? for the start page. You can also purchase the poem here. Becky has a daughter who also has Down syndrome. Hopefully, Becky will also become a member of our group.

I also encourage you if you have a child with Down syndrome, or even have been blessed to know such an angel, to join a group.

Aiden and his doctors Part 2

As I said Monday, Aiden's cardiologist's office called and wanted Aiden to go in to have his dig levels checked. I also had to have his thyroid levels checked. So Tuesday, I drag the poor kid to the secondary lab to have his blood drawn. Now, this is in a new hospital and the construction is still occuring.

I find the new lab and we are waiting in the waiting room. Someone in a lab coat comes in and I hand her the orders. Instead of taking us to the ER for his draws, she is going to do this herself. And she wants to stick Aiden in his arm. Uh, yeah, OK. Right.......

So, instead of a phlebotomist, an ER nurse, and myself holding Aiden down on a gurney, I am sitting in this chair contraption that she thinks is going to hold Aiden still. She proceeds to stick a butterfly needle in Aiden's left arm and manages to withdraw 1mL (out of 5mL) before the vein blows. I manage to get Aiden to calm down enough to remove his sock and shoe. To which the lab tech says that she must have dr's orders to stick his foot (other than a heel stick to which I inform her will clot and we will be back for more testing). So she calls the dr and asks. They only want to use the foot as a last resort.

Aiden's right arm is now subjected to another butterfly needle for the remaining 4 mL of blood. To which, Aiden is screaming at the top of his lungs and crying. Meanwhile, I am trying to hold this screaming, squirming, crying, trying with all his might to free himself from my grip child. I was going to take Aiden in for his chest xrays, but no mom can be that mean. Oh, and when Aiden is this mad, he gives you this look as if one day he will have his revenge.

To which, he exacted last night. Aiden was up screaming every 2 hours. He wasn't hungry, he wanted to cuddle. We managed to get a total of 2.5 hours of sleep last night between the screaming child and the crying puppy. And those two hours of sleep were snuggled on the sofa.

I just got off the phone with the cardilogist's office. All the lab results came back normal.

Hopefully, he will have forgotten this in the next two months time before we go do this again.

A Mom's Letter to Santa

Dear Santa,
I've been a good mom all year. I've fed, cleaned and cuddled my children on demand, visited the doctor's office more than my own doctor, sold sixty-two cases of candy bars to raise money to plant a shade tree on the school playground. I was hoping you could spread my list out -- over several Christmases. Since I had to write this letter with my son's red crayon, on the back of a receipt in the laundry room between cycles; and who knows when I'll find any more free time in the next 18 years, so now - -

***Here are my Christmas wishes***
* I'd like a pair of legs that don't ache (-in any color, except purple, which I already have) and arms that don't hurt or flap in the breeze; but are strong enough to pull my screaming child out of the candy aisle in the grocery store.
* I'd also like a waist, since I lost mine somewhere in the seventh month of my last pregnancy.
* If you're hauling big-ticket items this year, I'd like fingerprint resistant windows and a radio that only plays adult music; a television that doesn't broadcast any programs containing talking animals; and a refrigerator with a secret compartment behind the crisper where I can hide to talk on the phone.
* On the practical side, I could use a talking doll that says, "Yes,Mommy" to boost my parental confidence, along with two kids who don't fight and three pairs of jeans that will zip all the way up without the use of power tools.
* I could also use a recording of Tibetan monks chanting, "Don't eat in the living room" and "Take your hands off your brother," because my voice seems to bejust out of my children's hearing range and can only be heard by the dog
*If it's too late to find any of these products, I'd settle for enough time to brush my teeth and comb my hair in the same morning, or the luxury of eating food warmer than room temperature without it being served in a Styrofoam container.
If you don't mind, I could also use a few miracles to brighten the holiday season. Woul d it be too much trouble to declare ketchup a vegetable? It will clear my conscience immensely.
It would be helpful if you could coerce my children to help around the house without demanding payment as if they were the bosses of an organized crime family.

Well, the buzzer on the dryer is ringing, and my son saw my feet under the laundry room door. I think he wants his red crayon back.

Have a safe trip Santa, and remember to leave your wet boots by the door, and come in and dry off, so you don't catch cold. Help yourself to cookies on the table, but don't eat too many or leave crumbs on the carpet.

Yours always with love and appreciation,
a Mom

P.S. One more thing. . you can cancel all my requests, if you can keep my children 'young' enough to believe in Santa. ...

What are you thankful for?

Awesome Graphics at pYzam.com

I am thankful for an extra chromosome and all the new friends I have made because they get it.

I am thankful for a wonderful surgical team who helped keep Aiden here where he belongs.

I am thankful I still have some sanity left after all this year has thrown at me.

I am thankful for the support groups I have, both IRL and online.

I am thankful for Chris being in my life (again!)

I am thankful for all the hugs and kisses I get every morning, afternoon, and night from Aiden.

I am thankful that I am able to be a stay at home mom and help Aiden develop into the child he is becoming.

I'm tagging Pam at Rhett's Journey, Michelle at Elliot's Expeditions, Amy at The Fledge Farm, and Shannon at Gabi's World. What are you thankful for?

A Boy and His Dog

Aiden's New Therapy Toy

Well, it's not really a toy, it's a Pug. We have been looking to get Aiden a puppy to help him and be his companion.

Today, I got online and looked in the classified section of the newspaper. There was an advertisement for these Pug puppies. So I called the number and talked to the lady who answered. They live way out in the "sticks", so to speak. I went and picked up Aiden from school, came to the house and got Chris, then we went and checked Chelsea out of school (she had a dental appointment).

As we were going to the dentist, we had a flat tire. Thankfully it held until we could get to a tire shop. After the dentist, I called the couple who had the puppies and told them that we would be running late due to the flat.

When we got to their house, we looked at thier dogs and she brought out this little puppy. We told her that we wanted a dog for Aiden. She could see the scar on his chest from his heart surgery and asked questions.

Well, the best part of the day, is they gave us this pedigreed puppy.

Aiden and his doctors

Well, today Aiden had to go in for his booster flu shot. He was the second kid in line to get his. The lobby was full of kids waiting. Aiden was such a big boy. He cried for only a second and then he was done.

We also had to drop off his Holter monitor at the cardiologists office. On the way to the pediatrician's office, I called the cardio office. Aiden is supposed to get his thyroid checked every 6 months, as all children with T21 should. However, it has only been checked once and that was while he was in the hospital for the chylothorax. I have asked Aiden's pediatrician about getting it checked regularly, but he hasn't been concerned with it. Well, back to calling the cardio office. I called this morning and talked to Tracy, Dr. Cardio's nurse. I explained about the testing and how Dr. Pedi wasn't too concerned with it. She asked what lab we use for Aiden's dig level check and I told her. She seemed surprised that we didn't use the main hospital lab.

At the main lab, the phlebotomist sticks Aiden a minimum of 5 times to fill this little bullet. Only to call once we have pulled into the driveway to say that his blood clotted and they can't read it. And they want me to bring him back in for more torture, again another 5 sticks. Well, instead of subjecting Aiden to that misery, we go to the secondary hospital to the lab. There the phlebotomist sends us to the ER to get his blood drawn. It takes one stick. Hmmm, 1 stick compared to 10? That's a no brainer....

So next week, Aiden will go in for his dig level check and for his thyroid check. I looked at the order and she has 4 tests ordered. I don't understand what all the numbers are, but hopefully they only need to stick him once.

New movie about Down syndrome

Click here to watch the trailer.

An unconventional love triangle between three childhood buddies; two girls, one born with Down syndrome, and one boy, who all grow up fighting who they are inside, how they are perceived by society as a whole, and who they ultimately strive to become as individuals through the obstacles that are inherently present

Mmmmmmmmmm Jello

Well, not really Jello, but Jello is involved. This is one of the Jello Cheesecake cups. If you haven't tried them yet, I highly recommend it (Heaven in a cup).

Aiden's IFSP

As posted yesterday, we had Aiden's IFSP. Things went pretty well. Starting next week, due to all the new things Aiden is attempting, he'll receive PT once a week. Speech therapy we'll keep at once a month until Aiden starts to say more words.

Also, there is a program here that Aiden has been on, Disabled Child's Program. Anyhow, they will pay for any developmental toys that will help Aiden. So, we get to go through the catalog and start picking out toys that will be beneficial to him and developing his muscles and reaching those milestones.

Please Vote

This picture was taken by a friend of mine, Pam (editor at Rhett's Journey). It is of her 2y/o Rhett. Rhett and Aiden share a little something extra by way of the 21st chromosome. Here is the link to vote

Can You Tell?

Many times I wonder As I go throughout the day, Can you tell that I am special, When you look my way?

Can you tell that I am different, When you look into my eyes, And see the tiny Brushfield spots, That sparkle when I smile?

When you see my chubby little hands, The line so deep and long, Can you tell that I’m unique, When I sign to you in song?

Can you tell by looking at my face, So sweet and full of joy, That I’m as precious as they come, Mommy’s Little Boy?

And Daddy’s Little Girl When she dances all around, Can you tell by the way she twirls, In her ballerina gown?

Can you tell by my expressions, By the way my body moves, By the little things that differ, From the children known to you?

Can you tell that I’m a blessing, Sent from up above, To live here on this earth with you, And fill your world with love?

Can you tell that I have feelings, The same as all of you, Sometimes I laugh, sometime I cry, My heart is human, too.

Can you tell that I am worthy? Do you see me less than whole? I hope you can appreciate, My selfless perfect soul.

My love is unconditional, Loyal ‘til the end. Can you tell that I am capable, Of being your best friend?

Can you tell that just like other kids, I love to run and play. But, at times I need to do these things, In my special way.

Don’t judge from my appearance, There are differences, it’s true. But, when you really think of it, Can you tell I’m just like you?

by
Becky Bowen

Early Intervention

Since Aiden was a little over 2 months old, he has been enrolled in our state's early intervention program, Sooner Start.

Our first therapist was Kristen. She came to the house once a week for therapies. And she was Aiden's therapist while Aiden was in the hospital for heart surgery. I called her a few times based on what the therapists at the hospital were saying. Kristen got married and moved to another county and we lost her as his therapist.

Now we have Karrie and Kathy. They are Aiden's PT and ST (respectively). Karrie comes out every other week and Kathy comes out once a month. Since we started therapies with these two, Aiden has learned to sit both supported and unsupported and drinks from a sippy cup. Now we are working on crawling. I wanted him to crawl by Christmas, but kids with Down syndrome have their own plans....

Anyhoo, today we have Aiden's IFSP, or Individual Family Service Plan. I'm hoping that Aiden will get therapy every week since he is now wanting to try more things. And it will help reinforce what he is learning in school.

Deja Vu?

Time change sucks.

I went to bed last night at 11pm (well, 10 after I was about to fall asleep and suddenly remembered I had to set the clocks back). At 1:49am, Aiden decided to let out a blood curdling scream. So, I get up and pick him up from his crib. I changed his diaper, but he wasn't wet. I got a bottle made, but he wasn't hungry. He wanted to cuddle. He does this whenever he has his bad dreams. Which I don't care what the nurses said, I think he remembers his heart surgery...... but I digress.

Anyhow, after cuddling with Aiden in the recliner, he finally falls back to sleep. I carefully place him back in his bed so I don't wake him up. (See previous post about teething for reference.) I managed to get back in bed at 1:30 am. I woke up 20 minutes later than what I went to bed at.

Next Aiden wakes up at 5:00 am, though his body thinks it is 6am. Now he is hungry and his diaper is wet. And he wants to play. However, my body is screaming "MORE SLEEP". So, I position the two of us on the sofa watching the History channel and bottle in tow. I managed to get him back to sleep sometime after I fell back asleep. I'm hoping he didn't consider that his morning nap because we were back up at 6:30.

Time change REALLY sucks

Teething and Housework

Monday through Thursday, Aiden is in school. School is 45 minutes away from the house, so I usually spend the day in the city to save on gas. Friday and Saturday I try to clean the house and do the domestic things that I can't get done during the rest of the week either because of school or Chris is off (he works 4 days a week, minimum of 10 hour shifts Wednesday - Saturday).

I managed to dust the living room and make the beds. I managed to get some shelves hung up in Aiden's room. I thought I would tackle the laundry. THOUGHT being the operative key word.

Instead, my 14 month old child decides again that he would like to attempt to push a tooth out. I say attempt because for the past 6 months, Aiden goes through periods where he wants to get teeth, but he hasn't managed to yet.

Teething is not a fun experience. For those of you who have yet to experience this, imagine a big, floppy eared hound dog and the slobber one produces. Now imagine that this hound dog can whine and consistently jumps into your lap. Meanwhile, the living room floor is full of toys and cloths that said dog has pulled out of everywhere to chew on. (Aiden refuses to keep socks on his feet. Why? Apparently cotton tastes good.)

Naps are non-existant. Usually, he'll have one in the morning and one in the afternoon. Naps are good, it means I have time to fold laundry and iron Chris's work shirts. NOT TODAY!! Nope, instead, this teething, slobbery, whiney little thing has decided that his gums hurt. At least this time around, my fingers aren't the favourite chew toy of the day.

As I am attempting to take laundry out of the basket to fold, sounds of laughter are being emitted from the blaket Aiden chooses to love on. Now, I'm not sure why. Aiden has never laughed when I'm folding laundry. His arms are in the air with each towel being pulled from the basket and laughter that would make a comedian proud along with it.

You think to yourself, "Now I know why God allowed the Scottish Highlanders to make whiskey". A man didn't come up with the idea of whiskey, a mom to a teething toddler did.

While folding the laundry, Aiden decides he wants a bottle. Does he want to hold it? NOPE, that's what Mommy is for. So, I sit in the recliner thinking "Hey, maybe he'll take his afternoon nap." We're going to a new restaurant tonight and I don't want to take Mr. Grumpy. Well, he falls asleep. HOWEVER....... as soon as I stand up to put him in his bed, WAKE UP.

So, my laundry is in the dryer, Chris's shirts are still not ironed, socks and blankets are on the living room floor, and Aiden is rolling around chewing on everything in site.