July Equals......New Pediatric Residents....

And we've had some good ones over the years. Some are timid, others are over-confident and some are down-right cocky. In the end, they each learn quite a bit about many different conditions by taking on my kids!

We always get asked if a new resident can listen to Eli's heart. We always say yes, of course. I mean, it is a teaching hospital. It's not every day that a resident has a chance to hear the 'Chitty, Chitty, Bang-Bang' coming from a child's chest. We did joke at one time that it was a-dollar-a-listen when the parade of students seemed especially long....

So this brings me to our doctor visit yesterday. Can I just say, if you use a teaching hospital, never, ever schedule a routine doctor visit for July. New residents plus back-to-school rush equals a very long day. But, I digress...

The resident we saw had an exceptional manner about her. She was confident, while projecting a friendly, humble air. She was great with Eli and I was thankful that I had decided to take him alone. I usually take two or three at a time-to really test those residents. Just kidding.

Back to yesterday.... As we were going over my list, and I always have a list, the resident asked me about my 'heart concerns'. So, I go into the story.

Last week, while at an outdoor event at our church, Eli wanted to jump in one of those bouncie houses. It was hot, but the sun had already gone down, so it was pretty bearable. He went in and bounced for what seemed like forever, but was actually less than fifteen minutes. When he came out, he sat so I could put his shoes on, then fell back on the ground, panting. Other than that, he was acting fine. I took him inside for water and that's when I saw it. His face was bright red and blue. It wasn't just me being paranoid-he was definitely grabbing attention.

My gut told me he was fine, but I thought I'd mention it. That and the panting. He does that a lot. But, he's so much more energetic now and he plays outside more. I figured it would all fall into the same category as 'once a heart kid-always blue in the pool'. Did you know that CHD causes a child's circulatory system to develop a bit differently in an effort to oxygenate the body? Yeah, that was my gut feeling.

Anyway, I told the bouncie house story to the resident and she is looking at his medical chart on the computer, trying to sort out his CHD and the surgery he has had. She makes the statement that he should be okay since he's 'fixed'. Then she listens to his heart.

I don't think she was prepared for the 'Chitty, Chitty, Bang-Bang". And to be honest, I haven't thought to ask about the heart sounds since Eli had his surgery. I have no idea what it sounds like now. She handled it well, though. Then she stepped out to go over my list with her attending physician.

They both quickly returned and said they had put in a call to Cardiology and would like to have us worked in just to check things out. So, before I knew what was happening, we were being shuttled out of there and up to the 3rd floor. I kept saying that my gut was telling me that everything was fine, but their near-panic did break me down a bit.

Eli's cardiologist met us in the office and after a quick O2 check (high 90's), he listened to our story and to Eli's heart. I told him about the resident's reaction and my gut feeling (a mother's gut feeling, no less). He pointed to the scar on Eli's chest and smiled. "When you have one of these, you automatically get special attention." No kidding! Better safe than sorry....

The cardiologist called it 'Racoon Face'. The red robber mask with blue eyes and nose is what I called it. He explained that it was caused by the Glenn shunt, the complicated circulatory system (see??) and the exertion, but is totally expected. As long as Eli feels and acts fine and shows no signs of obvious struggle, he can jump in the bouncie house to his little heart's content (pun intended).

Now that we have this resident broken in, I think we'll keep her for a couple of years.

One of these days....

I'm going to post something new on this blog!

We've had an incredibly busy and complicated late spring/early summer. We've added Asperger's Syndrome and seizure activity to our family's list of 'conditions'. We've experienced a senior prom, the end of our first year in public schools (long-time homeschooler here), extended school year programs and IEPs.... I started working again. Freelancing as an independent contractor. It's been a long time and it takes a lot of 'me' away from my family.

I make it sound a bit heavy and overwhelming, and much of it has been. However, the good times have rolled and I'm sure they'll keep rolling. Everyone is healthy in spite of the A's: Autism, Asperger's, Asthma, and ADHD.

And the CHD (congenital heart disease).

Oh, and the seizures.

So, for the hand full of folks that come here to read about our crazy life, I promise I plan to come back....hopefully sooner rather than later!

Spring Soccer and Asthma

Our community has a great AYSO chapter. Imagine the excitement in our home when they announced a first-ever spring soccer season. My kids love soccer and were eager to secure spots within the various age brackets.



While this marks our first venture in spring soccer, it also marks another first. This will be the first team sport played by our son since his asthma diagnosis last fall.



Most people have heard of asthma, but many have no idea what it really is. Asthma is a serious, chronic condition that affects the airways of the lungs. During an asthma attack the lining of the airways swells and becomes narrow. This swelling can be present to some degree all of the time, but worsens considerably during an attack. When the airways swell they become more sensitive. Finally, added obstruction is caused when the muscles surrounding the airways tighten.

During an asthma attack a child may tire easily, cough, feel tightness in the chest, wheeze and complain of shortness of breath.

There are many causes, or triggers of asthma. Common triggers include pollen, mold, animal dander, cigarette smoke, respiratory infections and exercise. A person with asthma can respond to any combination of triggers.

With daily medications and peak flow checks, we are working hard to control our son's symptoms. He hasn't had any problems during physical exercise, but we are armed with knowledge and a doctor-endorsed asthma action plan should he have problems.

We are looking forward to a fun and successful spring soccer season because we have equipped ourselves for success on and off the field.

Kids with asthma do not have to sit on the sidelines. If you suspect your child may have asthma, contact your doctor.

You can find out more about Asthma and AYSO soccer here:

Asthma-American Academy of Allergy Asthma and Immunology

Asthma- American Lung Association

AYSO- The American Youth Soccer Organization

Bye-Bye Blondie....

The craziest thing happened recently.


Within a few short moments, the clippers emerged victorious. The job at hand was complete.The seat once occupied by my beautiful, blond, baby boy was filled by a dark, bouncing preschooler.


Difficult, it was, to process. My mind was overloaded by the concept. I was torn. I'm so thankful for this child grinning up at me, and yet, fighting desperation. I wanted to rake the blond wisps from the floor and somehow return them to their rightful position.


So, this is what it feels like to leave this stage in life, to watch your youngest child transform. It's sad but not at all unpleasant. Once again, I find myself thankful.....

Good Looking At Me!

"Touch red. No, this is red. Touch red....GOOD JOB!" Several high fives and loudly proclaimed yays later, we are back at it.


"Eli. Eli. Look at me. Look at me....GOOD LOOKING AT ME!" More yays and high fives and maybe a tickle.


"No. It's worktime." (Sign work time.) "First work, then ball."


"Ont baw."
"ELI! Good talking! Good talking to Mama!"


"Touch stomach. Stomach. Here. This is your s.t.o.m.a.c.h. Eli. Touch stomach...YAAAY!"


"Now it's breaktime." (Sign break time.) "Take a break, Eli."


And so it goes. Over and over. This is what Discrete Trial sounds like. Discrete Trial is a component of ABA therapy, or Applied Behavioral Analysis, the therapy for Autism Spectrum Disorder.


Kids with Autism must be taught in small repetitive increments. One skill must be repeated ten times, one hundred times, one thousand times. The color red, for example. Eli is learning the color red. We have been working on the color red since November. He is 'touching' red most of the time now. But, we haven't started adding a distracter yet. It's just red. A red square or a picture of something red. No other color. Next, we'll work on blue. When he willingly touches blue at least 80% of the time, we'll start back with 'touch red' while showing him a red object beside a blue object. And we'll go on and on until he can identify his colors.


At 3 yrs, 4 months old, Eli has speech therapy, feeding therapy, occupational therapy and physical therapy every week. He attends a public school preschool that is ABA methodology-based five days a week. He receives his discrete trial therapy every morning at school and works again at home in the afternoon.


Every opportunity is a learning experience. This is true for all of us. With Eli, every opportunity is a basic, broken-down-into-pieces learning experience. If he wants to work a puzzle, he works a puzzle. We talk about the picture on the puzzle, we trace the shapes within the puzzle, we point to the color red. If he picks up a toy, someone in the house is down with him for Floortime, another component of ABA. This is when he learns to interact with another person and make more eye contact, share (my turn, your turn) and play with the toy appropriately instead of just, say, spinning its wheels.


Eli is diagnosed with PDD-NOS. This is also called Atypical Autism or sometimes High Functioning Autism. Eli happens to love discrete trial work. A real blessing. He lives in a home where he has four siblings and two parents who love him and care about his future. Everyone pitches in to help. Another blessing. Blessed? By autism? We are so blessed because of Eli!


Because Autism therapies are not covered by health insurance, his home therapist is....me. I'm not a trained ABA therapist. I'm just his mom. And I'll do whatever it takes to help him.


Today is World Autism Awareness Day. Here are some facts about Autism.

*Taken from Autism Speaks.org:

• 1 in 150 children is diagnosed with autism
• 1 in 94 boys is on the autism spectrum
• 67 children are diagnosed per day
• A new case is diagnosed almost every 20 minutes
• More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
• Autism is the fastest-growing serious developmental disability in the U.S.
• Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases
• Boys are four times more likely than girls to have autism
• There is no medical detection or cure for autism

To find out more about Autism, visit the following web sites:

http://www.worldautismawarenessday.org/

http://www.autismspeaks.org/

http://www.talkaboutcuringautism.org/

Congenital Heart Futures Act

Please take a few moments to write a support letter for this very important piece of legislation.

You can read all about it here. There is a form letter and links that will help you find your representatives.

This is vital for all of us touched by CHD.

Thank you!

If I could make a wish......

to take a winter trip anywhere, I would choose to go here:

and see this:

The Iditarod

Maybe someday...... For now I'm pulling for Jeff King!