Home from School

Aiden stayed home from school today; he woke up at 2am coughing. He coughed so much that he made himself throw up. So that earned him a trip to Dr. Pediatrician's office.

His saturations are good (97%) and his lungs are clear, so we're not sure what is up other than sinus drainage.

Aiden also had his first speech therapy session with his new ST, Jessica. He did some signing for her and waved and said "hi". He wasn't that impressed with her until she brought out the bubbles.

Yesterday I made an appointment with Dr. ENT #3. This one is who all the high risk heart kids gets to visit. And YES!!, he has privileges at Children's Hospital in Tulsa.

Meanwhile, Chris is still off of work and hurting. I made him go to Dr. Chiropractor yesterday. He has been complaining of headaches. Dr. Chiropractor did all the adjustments and wants him to come back in a week.

We were going to go see Chris Cagle in concert tonight, but there is no way Chris is going to want to go and walk around the Tulsa State Fair.

Sorry About the Lack of Aiden Updates...

Thursday Aiden had his speech evaluation. Then Chris calls shortly afterwards and proceeds to tell me that he was in an accident while at work; he got double rear ended. He was at a stop light, a Ford F 150 was behind him, and a Tahoe ran into the F150 causing it to hit Chris's work van.

Well, Chris has whip lash and spent all day yesterday at home laying around.

Aiden and I spent the morning shopping. I needed anther hard drive for just pictures.

Aiden also had his PT evaluation with the new therapy people. He is really not going to like me. She is pushing for 2 times a week, on top of 4 times at school, and once a week with his EI therapist. So that is 7 times a week in 5 days. She also wants to get Aiden a smaller gait trainer and a special stroller.

But in the meanwhile, here are pictures from yesterday...

The Wonderful World of Sippy Cups

If you have made a sucessful transition from bottles to sippy cups... you will enjoy the laugh you are about to receive. If you are working on the transition, someone shares your pain. If you haven't made the transition yet, take notes.

We, as parents, tend to follow the "expert advice" and do exactly what the pediatricians tell us. After all, they went to school to learn these things, right? I am a firm believer that when Aiden is ready to do something, he will do it. If he isn't ready, he won't. So what is the use in pushing something new on him and forcing him to do something that he obviously isn't ready for? Chris, on the other hand, wants to keep Aiden little forever.....

About the time Aiden started to hold his own bottle, I thought why not introduce a sippy cup? Other kids his age, real age - not developmental age, were mastering the sippy cup. At least introduce him to one. Let him play with one, try to figure it out. However there was just one small problem, his hands. Aiden's hands are small and here I am thinking, "where am I going to find a sippy cup that small?"

I was at Babies 'R Us one day, looking for bottle caps and decided to take a look-see at the sippy cup section. Nope, too big. Nope, too tall. Nope, too fat. Nope, he isn't going to drink that much.

Down at the bottom of the shelves was a pack of Safety 1st cups. They were colourful. They were small...

It has little grooves for Aiden's small hands to grip. However it was a no-go. He wanted nothing to do with it.

Then, when Aiden started drinking from an open face cup, again another search at Babies 'Us was made. This time, I got a sippy cup that resembles a real cup when the lid is off. There is no "lip" for Aiden to get an aversion to.

He liked the cup, he just didn't like the lid....

Then school wanted Aiden to learn how to use a straw cup. Open faced cups tend to make a mess. So, Aiden's ST, Cathy, brought Aiden the Honey Bear.

The concept behind the Honey Bear is cool. It has texture. Aiden was fascinated with it. He just wouldn't use it. He wanted to play with it.

Then the ST at school introduced the Infa-trainer. I like this cup!!!

However, this cup is designed for children with special needs.... Have you ever bought anything designed for special needs kids? That jacks the price waaaaay up. This cup is $100 for 12. As much as I could wish, I so don't have the income that the Little Light House has.

One day I was at Wal-Mart getting Aiden his Gerber Graduates Entrees. And what do they have in their sippy cup section? A Playtex sippy cup that looks like the Infa-trainer....

The only problem is that they don't have a 4oz size. Only the huge 8oz size that Aiden can't hold.... It was a nice try though.

For Aiden's birthday, Grandma Nise got Aiden some sippy cups. So I tried one. And he used it!!!

I don't know who makes it. I don't really care. He'll use it. It holds 8 oz and Aiden can hold it in his hands.

Innocence

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Big Boy Update

It's been a week since Aiden got his big boy bed and he hasn't gotten out of it yet, although he is thinking about how to.

He will not use the little pillow, he has to have a full size one. Even though he refuses to use one when he sleeps in the big bed.

Thursday, we have an evaluation with speech therapy. Dr. Pediatrician agreed that he wasn't getting enough through EI services, so she ordered more. And he has an evaluation with another PT on Friday; however we are keeping his EI PT, Karrie, also. Karrie will work with Aiden on Wednesdays, Amanda has Aiden on Fridays, and the rest of the week, he'll get PT, ST, and OT at school. I'm thinking Aiden is going to hate me come Saturdays.... Yes, I'm mean like that.

Aiden was sick at school today and was napping when I got there to pick him up. As soon as Circle Time began, he was awake. He did however manage to take a brief nap on the way home. And as soon as we walked into the door, a temper tantrum began.

Aiden has gotten into throwing his bottles. Well, when he throws them enough times, they crack... As they crack, Mommy throws them away and she does not replace. Aiden is using a sippy cup at school and I don't see why he shouldn't use one all the time at home. So, when he has broken all his bottles, he is just SOL and will have to use a sippy cup at home. Yeah, I'm mean like that too.

A Special Joy 8: Babies with Down syndrome

Click here to see if you recognize anyone

Mini Laps 2008

Watch for Raggedy Andy....

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

New Camera, More Pictures

So after 5 days of not having a camera thanks to a certain little boy, I spent all week looking for a new one. I did my research, I compared features. I really don't need a ton of megapixels; I want ZOOM!

And I found one - at Wal-Mart.

It has 10 megapixels, but it also comes with 12X optical zoom. I can deal with that. My mom's boyfriend has a digital with 15X, but I don't intend on taking many pictures of the moon. Just Aiden. And I'm pretty sure I can spy on my neighbours with this one, but ewww.....

So, Aiden and I went out shopping today. Of course, with buying a new camera, I had to get a new camera bag, because this camera isn't going to fit into the other camera bag. I also had to get elastic to keep the Raggedy Andy hat on Aiden's head.

I'll stop being mean now and here are some pictures of Aiden in his new big boy bed.

 

Yes, it's just a teaser. I'll have lots more pictures and some video from MiniLaps tomorrow.

A Response from Senator Coburn

September 17, 2008

Ms. Stephanie B____
(removal of address for, you know, privacy issues)

Dear Ms. B____,

Thank you for contacting me regarding S.1810, the Prenatally and Postnatally Diagnosed Conditions Awareness Act. I appreciate hearing from you on this important issue and would like to clear up any confusion you have regarding my position on this legislation. I strongly support the purpose of this legislation. I am adamantly pro-life and I do not believe that any baby should be terminated.

As a doctor who has delivered nearly 4,000 babies, I know that each child is a precious gift of God. I am so grateful you share my conviction and chose to have your precious child Aiden. The legislation you heard that I was opposed to was a combination of 35 bills, one of which was S.1810. I supported several of the bills in the package but the overall combination was irresponsible. However, I have supported this bill as stand-alone legislation.

I supported S.1810 in committee and have successfully worked with the bill's sponsors to find funding offsets to pay for the new authorizations in the bill. I support its passage through the full Senate, but currently the bill is being held up by another member of the Senate. I am glad that we will be able to both avoid adding to our national debt of almost $9.5 trillion and help individuals with prenatally and postnatally diagnosed conditions if we are able to pass this bill.

As you know, S. 1810 would authorize the Department of Health and Human Services (HHS) to conduct activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions, including awarding grants to collect, synthesize, and disseminate current scientific information and coordinate support services. The legislation also requires the Centers for Disease Control and Prevention (CDC) to provide assistance to state and local heath departments to integrate the results of prenatal or postnatal testing into state-based vital statistics and birth defects surveillance programs. Finally, the legislation requires grantees to offer health care providers brochures for patients with up-to-date scientific information concerning the life expectancy, clinical course, and intellectual and functional development and treatment options for a fetus diagnosed with, or a child born with a related conditions.

Again, as a practicing physician who has delivered nearly 4,000 babies, I have witnessed first hand the miracle of life. Few things are as miraculous as witnessing new life being brought into this world. Furthermore, I have handled nearly all of the major complications associated with pregnancy which has only strengthened my belief that we must do all that we can to protect the most defenseless members of our society, the unborn, and equip parents to make wise decisions.

Once again, thank you for contacting me. I appreciate your offer to visit your group in Tulsa. I will have one of my representatives contact you to see if they can visit sometime. Please stay in touch.

Sincerely,

Tom A. Coburn, M.D.

United States Senator



TC: egf

A Big Boy Bed

After our meeting with Senator Coburn's representative, I was prepared for a quiet afternoon at the house. Aiden's PT had to cancel since she was on her way to pick up her son who was at school vomiting.

I opened my email inbox. There was a recall notification for cribs.

Well, crap. I opened the email and read the recall. The brand of Aiden's crib had a recall. I read the manufacturer's codes that were listed. I went into Aiden's room and moved the blanket drawer from under Aiden's crib. I located the sticker on the headboard. His crib has been recalled due to serious entrapment and suffocation hazard to infants and toddlers.

I immediately took apart the crib, loaded it in the Jeep, loaded Aiden in his carseat, and went to Wal-Mart. They gave me my money back. I intended to buy a new crib, but Aiden had other plans - he pooped in his diaper.

So, when Chris got home I went back to Wal-Mart since he could watch Aiden. I didn't like the other cribs. They didn't have the same features.

Instead of getting a crib, Aiden got a big boy bed.

He slept pretty well in it last night. We didn't have any accidents. And he stayed in it all night, except when he woke up at 3am and wanted to come to bed with me.

We'll see how it works and hopefully he'll stay out of trouble.

A Political Meeting

Yesterday I woke up an hour late. It was 7am. I jumped out of bed, got dressed, woke Aiden up, got Aiden dressed, and took him to school. It was picture day, so he could not miss.

While Aiden was at school, I went to my mom's. After a few hours of being here, my phone rang. It was a number I did not know, so I cautiously answered it. She introduced herself as so-and-so with Senator Coburn's office. My email to Senator Coburn regarding the Kennedy-Brownback bill landed on her desk. They were going to be in Coweta yesterday, however I was in Tulsa. She asked what time we would be back in town and I gave her a time. We made plans to meet at 2:30 at McDonalds since it is a kid-friendly place.

I didn't have time to get a presentation ready. I had to pick Aiden up from school and rush home to shower, since I didn't get one that morning. Aiden and I met with the representative. And, as usual, Aiden was a charmer.

We discussed Senator Coburn's stand on abortion. I don't care what that is. I, personally, am pro-choice. It is not my business what any woman chooses to do with her body. I do not know that woman's situation. Nor do I think that the government needs to be involved either. Now that being said, I do believe that 2nd and 3rd trimester abortions are wrong.

We discussed why the Kennedy-Brownback bill was not passed by Senator Coburn and how this became known as the "Coburn Omnibus". The Kenndy-Brownback bill was tied in with 35 other bills. One of which had something to do with pet monkeys biting their owners. I'm sorry... If you go out and buy a pet monkey and it bites you, that is your own damn fault. You do not need legislative funding or intervention.

So yes, the Kennedy-Brownback bill failed because it was attached to other bills involving $10 million dollars of bullshit crap. Most of the public would probably throw a fit if money was spent on that instead of trying to solve the high gas prices. But I did inform that the price of gas is usually the last thing on the minds of families affected with special needs. Regardless of the price of a gallon of gas, we are still going to have to fill up our vehicles to take our kids to the numerous doctors, therapists, and various other appointments or events.

If you want to do something to help the special needs community, which by the way is over 11 million families... do something about the cost of medical needs. Do something about the insurance companies who tell families that their kid has already met their lifetime maximum benefits at the age of 2. Do something about what insurance won't cover and who they won't cover. And stop doctors from telling newly diagnosed parents outdated information and the first option from being termination.

I told her flat out that doctors are many parents first encounter with discrimination. And it is true. If the doctors of the world don't accept a child with Down syndrome or any special needs, then how on Earth are we supposed to get the rest of society to accept our kids? The general population won't, the education system won't and neither will the workforce. Plain and simple. The chain of discrimination starts with doctors and it is just a vicious cycle from there on.

We discussed Aiden's school. We discussed how Aiden and children like Aiden needed schools like his. It prepares the kids for inclusion in public school systems. However these schools don't generally exist.

We talked about the depletion of Social Security benefits. Sadly, SSI is going broke; yet our kids need SSI benefits.

The meeting ended on a good note. Senator Coburn is for the Kennedy_Brownback bill and wants to re-introduce the bill back into the Senate. If it can go as a stand alone bill and not intertwined with a ton of other bills that don't need to be there, it will pass.

Case of the Missing Shoe

Status: Closed

Date: September 15, 2008

Location: Behind his dresser

No Tubes for Aiden

Dr. ENT agreed that Aiden needs tubes and probably his adenoids out. But one small problem - Dr. ENT does not have privileges at the hospital where Aiden HAS to have surgery done...

So we are being sent to another group of ENTs.

It's Dead

My camera that is. Aiden just broke my digital. I was taking pictures of him, he grabbed it and dropped it.

Can We Talk, Ben Stiller?

Oh, The Horror!!!

Canadian Doctor Warns Sarah Palin's Decision to Have Down Baby Could Reduce Abortions

from the LA Times

Sarah and Todd Palin's decision to complete her recent pregnancy, despite advance notice that their baby Trig had Down syndrome, is hailed by many in the pro-life movement as walking the walk as well as talking the talk.

But a senior Canadian doctor is now expressing concerns that such a prominent public role model as the governor of Alaska and potential vice president of the United States completing a Down syndrome pregnancy may prompt other women to make the same decision against abortion because of that genetic abnormality. And thereby reduce the number of abortions.

Published reports in Canada say about 9 out of 10 women given a diagnosis of Down syndrome choose to terminate the pregnancy through abortion.

Dr. Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists in Ottawa, worries that Palin's now renowned decision may cause abortions in Canada to decline as other women there and elsewhere opt to follow suit.

He says not every woman is prepared to deal with the consequences of Down babies, who have developmental delays, some physical difficulties and often a shortened lifespan.

Wider use of blood screening and amniocentesis during pregnancies can now accurately predict the presence of Down syndrome.

Lalonde says his primary concern is that women have the choice of abortion and that greater public awareness of women making choices like Palin to complete a pregnancy and give birth to their genetically-abnormal baby could be detrimental and confusing to the women and their families.

"The worry is that this will have an implication for abortion issues in Canada," Lalonde tells the Globe and Mail.

In her widely-viewed acceptance speech to the Republican National Convention and a TV audience of some 37 million last week, Palin did not refer to her baby's birth as a decision or choice. "In April," she said, "my husband Todd and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig.

"From the inside, no family ever seems typical. That's how it is with us. Our family has the same ups and downs as any other, the same challenges and the same joys.

"Sometimes even the greatest joys bring challenge. And children with special needs inspire a special love.

"To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House."

Others in Canada, which has just begun its own national parliamentary election campaign, see the Palins as positive parental role models who could help reduce the tide of Down syndrome abortions.

Krista Flint is executive director of the Canadian Down Syndrome Society, which says its goal is to foster "a climate of understanding and mutual respect for the dignity, worth and equal rights for ALL people."

The society now displays a photograph of the happy Palins with their baby on its homepage and offers to provide "positive and factual information" for an open discussion of Down syndrome.

However, Flint says doctors usually give couples very dark messages about life with a Down syndrome child.

"We know overwhelmingly the message families get is 'Don't have this baby, it will ruin your life,'" Flint says. "And I don't think people would look at Sarah Palin and see a ruined life. Regardless of politics, I think it's a good example."

Lalonde says giving women detailed information on the consequences of their decision is not actually encouraging them to seek abortions.

The Horrors of Physical Therapy

Aiden doesn't like physical therapy. He likes his therapist; he just doesn't think that, being as cute as he is, he should have to do anything.

Aiden will pout. Aiden will fake cry (and we know he is faking it because he rubs his eyes then looks up to see if Karrie or myself will show any sympathy). Aiden can turn on the alligator tears like a faucet. Aiden will climb up Karrie for a hug. Yes, he knows how to work that cuteness.

Yesterday, we worked on standing.

Karrie places Aiden between her legs and makes him stand up. Why Aiden has a problem with this, I'm not really sure. He will try and try to stand up at the bathtub. He tries to stand up to the trash can and the dirty clothes hamper.

And Karrie put him in the gait trainer.

 

  

 

Afterwards, he had a two hour tantrum with nonstop screaming and body flinging.

Low muscle tone, my butt.

10 Minutes for Down Syndrome

Watch CBS Videos Online


Watch CBS Videos Online

MySpace Users

EVERYONE please go IMMEDIATELY & add yourselves to this child's MYSPACE PAGE!! HE HAS CANCER & HAS A 1 MILLION FRIEND CHALLENGE!! LETS MAKE HIS GOAL.

James lives in the United Kingdom and has leukemia. This is what James's dad writes

Why the one million friends challenge? I get asked the questions, Why 1 million friends? What will it achieve? on a regular basis. So I thought I would try to explain. James and I used to come onto myspace to listen to music and look at the videos just before he was diagnosed and added a few friends. When James was diagnosed and we came to terms with the fact that his cancer and its treatment was going to take over our lives we needed a distraction and the "James and Daddy" page was born. I asked James if he thought we could get one hundred friends and then one thousand and the ten thousand. When we reached ten thousand friends I asked James to set the next target. James said ONE MILLION. We will gain nothing financially from this page but have gained friendship from people around the world and we have shared our story with you all and in return shared your stories. This page has helped us as a family deal with the tough times and share the good times. Now as a father I feel I have to achieve this challenge as I made a vow to James the day after he was born that I would never let him down and I would only make him a promise if I could keep it. So there you have it, the reason for the challenge and why I need you to help me get more friends. We have tried the celebrity route with minor success so all we can do is keep sending out the bulletins and searching out the profiles that have loads of friends and big hearts.

Do You Hear What I Hear?

The answer to that question is "NO".

Little Boy went to a hearing screening yesterday. It did not go well, but the results were what I expected. Aiden has so much fluid built up in his ear canals that he hears only muffled sounds in his right ear. In his left ear, 80 decibles didn't even register.

So, Monday when we meet with new Dr. ENT, pray that he will agree to take Aiden on as a patient and put the much needed tubes in. And new Dr. ENT goes to church with Dr. Secondary Cardiologist, so if he has any questions regaring Aiden's heart "that only his mother could love", he can go straight to the horse's mouth, so to speak.

If new Dr. ENT decides to pass on the heart issues, there is a group of people in OKC who specialize in kids with hearing issues and will work closely with his cardiac team there.

Waterplay

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He Has a Cold

Aiden really wasn't feeling well yesterday. His nose was running and he was coughing. I decided to let him sleep it off overnight and wait to see how he was feeling this morning to before he went to school...

We didn't sleep much last night.

I kept him home from school today. Chris and I had some errands to run in Tulsa. Chris had to get snails for his puffer fish and I had to run by Dr. Pediatrician's office to get the prescription for Aiden's iron supplements.

Apparently, I wasn't at the office fast enough. When I got there, the receptionist called back and let the nurse know that I was there. Out came Dr. Pediatrician's nurse and we briefly discussed the prescription. She then asked how Little Boy was doing. I told her that he had a runny nose, hasn't been eating well due to the runny nose, and isn't sleeping well either. So, an impromptu appointment was scheduled for an hour later.

I went back outside where Chris and Aiden were driving around waiting for me to come out. I told Chris that we had to come back in an hour so we made a quick stop at my mom's house for some special fish food and then a quick drive through Burger King for lunch.

I'm not too sure why we made it so quick, we waited an hour for Dr. Pediatrician to come into the exam room. Aiden's lungs are clear, but he does have a stuffy nose. So she diagnosed a head cold. And Aiden gets to stay out of school for the rest of the week.

I called Miss Kate, Aiden's teacher and told her. Alyx is sick also. Owen missed school. Audrey was sneezing all day. James also has a runny nose. So, it is best for Aiden to stay home since we need him to actually get better and not pass the cold around and around and around.

Also, if you could spare a prayer...

One of the little girls in our Mended Little Hearts group passed away today. She had complications from her heart surgery and had to be on ECMO. Her kidneys failed, her liver started to fail, and she had internal bleeding. There was nothing left for the doctors to do.

2 Year Check Up Results, Testing Results, and New Therapy Thingies

Tuesday Aiden had his 2 year old "Well Child" check up. Dr. Pediatrician ordered a lot of blood to be taken out of one little boy for CBC, Chem 14, thyroid levels, and a celiac panel. We had to wait for the results.

Yesterday, Dr. Pediatrician called.

Everything came back good. Well, almost everything. The celiac panel was negative, thyroid levels were in the normal range. However, Aiden is borderline anemic. So, Dr. Pediatrician is prescribing Aiden some iron supplements. Yeah, sure. Have you ever tried to choke down a liver flavoured pill? Ewwww......

In other doctor news, Dr. Pediatric Orthopaedic Specialist in Cushing has been replaced with Dr. Pediatric Orthopaedic Specialist in Tulsa. YAY!!!! I called Dr. POS in Cushing and they are sending Aiden's x-rays to Dr. POS in Tulsa. Aiden's first appointment is on the 15th.

Dr. ENT who is scared of Aiden's heart has been replaced with new Dr. ENT. They meet for the first time on the 15th also. Again, another no school day for Aiden.

The swallow study Aiden had on Wednesday went well. Aiden isn't aspirating, but he does have a gag reflex. I know, I watched it. He did flash penetrate twice, but both times were minute amounts and the radiologists said not to worry about that. Aiden didn't like the ranch dressing barillium, but he did tolerate it long enough for the study to be done without spitting it all over the radiologists.

Aiden, thankfully, doesn't realize that toys are therapy. He hasn't figured that one out yet. So, most of his birthday toys were bought with therapy development in mind. Yes, I am mean like that. Even the party favours we handed out at his birthday were therapy related. Bubbles. Bubbles are great for fine motor skills and oral motor skills. Shhh... just don't tell the kids....


And Little Boy got a Rifton gait trainer. Friends of ours ordered one for their little guy when he was 3. It took 6 months for the contraption devise to arrive; but by that time Dylan had already learned to walk. Well, Susan put it on Craigslist to sell.

I emailed her and said that if Aiden were anywhere near ready for it that I would take it in a heartbeat. (These aren't cheap; they gave over $1100 for Dylan's and she was selling it for $400.) She emailed me back saying that we could have it.

Well, Susan and Dylan brought it for Aiden during his birthday party on Sunday. And it sat in the garage until Aiden's PT, Karrie, could look at it and lower it for Aiden.

Let's just say that Aiden was not jumping up and down as enthused as Karrie was. He is fascinated with it, but he doesn't want to be in it. He has figured out how to get out of it. So, we will have to work on a harness to keep his little butt sitting in the seat.

Orange Class B-day Party for Aiden

Today was Aiden's birthday party at school. They love to celebrate the kids' birthdays. Aiden happens to be the first kid to have a birthday in the school year. Miss Kate lead the class in "Happy Birthday" in both singing and in signing.



So, I bought a small cake and ice cream for the kids. Today was Miss Audrey Belle's first time ever to taste birthday cake and ice cream. And Mom, Lydia, was right there to cheer her on. It took some time to get used to the cold of ice cream, but she enjoyed it more than the cake's frosting or Lydia's Weight Watcher's food.

Aiden was pretty much tired by the time the party started. They had gym right before the party (working off those calories before they consumed it) and all he really wanted to do was cuddle. However, he is also teething his 2 year molars...

Yeah, not a happy camper at all and pretty much had a tantrum until he realized that immediately following cake and ice cream was bubbles. And he got to control the bubble button.

My First Mystery

I don't know where, but I do know how... An Aiden.

Yesterday as I was getting Aiden dressed to go to his appointments, I had to stop in the middle of dressing him and answer the phone. Everything except his shoes were on.

Within 3 minutes of having my back turned to him, one of his shoes disappeared. Nowhere to be seen or found. I have turned my living room upside down and inside out looking for it. It's gone.

And he won't show me where it is....