This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

The news at Eli’s latest CF clinic appointment that studies have shown Eli’s lung function will likely start to differentiate from that of his non-cystic fibrosis friends at 2 got me kinda down, then it got me thinking.

Exercise starts now, lil buddy! Coach Mommy’s on the case.

Physical activity helps to preserve the lung function in people with cystic fibrosis.

It’s time we up the game. We’re joining the Y. Here in OKC we have a number of nearby Y’s to choose from — three within 5 to 8 miles, actually. Two evenings a week there are parent-child swim lessons for lil bud followed by swim lessons for Laila’s age group. That means we can go as a family. There is also family gym time, lessons for mom and, well, hopefully something pops likes to do. He’s gotten into swimming in the past. Maybe he will again. I’d also love to get Laila involved in soccer. It’ll be good for us.

I’d cancelled my membership after we had Eli. Way too busy to go.

I’m on my own nutritional reboot fitness mission. I had vowed to achieve my goal of dropping 20 lbs without throwing down any cash. I had to re-think that after hearing about the studies showing Eli’s lung function would most likely be different than those with ‘healthy’ lungs after 2. It doesn’t mean there will be any sort of sudden decline. I’m not sure exactly what it means. I need to read the studies. I understood from our lung doc that I should not be alarmed. The fact is he’s different. He has a chronic lung disease. So we will be different, too.

To get in the spirit I ran a 5K with little buddy this weekend.

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Tonight I started to do a little research. Here is the National Institutes of Health National Heart, Lung and Blood Institute’s take on CF and exercise:

Exercise

Aerobic exercise that makes you breathe harder can help loosen the mucus in your airways so you can cough it up. Exercise also helps improve your overall physical condition.

However, CF causes your sweat to become very salty. As a result, your body loses large amounts of salt when you sweat. Thus, your doctor may recommend a high-salt diet or salt supplements to maintain the balance of minerals in your blood.

If you exercise regularly, you may be able to cut back on your CPT. However, you should check with your doctor first.

Here are a few benefits and tips from Cincinnati Children’s Hospital:

Exercise can benefit almost everyone. Research has shown that there are several other benefits for those with cystic fibrosis (CF).

In healthy children, exercise can:

Make the heart and lungs stronger

Improve mood, psychological benefits

Improve bone health

Increase muscle strength

Help weight management

Improve blood lipids, blood pressure

Reduce risk of diabetes, heart disease

Improve gross-motor skills (used for jumping, throwing)

Improve quality of sleep

Children with CF can benefit from all those listed above PLUS these benefits reported in scientific research:

Releases mucus, form of ACT

Strengthens lungs

Slows the rate of decline in FEV1 and may show small increases in FEV1

Small increases in body weight (especially with strength training)

Improves quality of life

Increases rate of survival

Improves balance, flexibility

The article from the children’s hospital also warns against some types of activities (no problem, we can skip skydiving). Children with CF complications like an enlarged liver or spleen should avoid high-intensity contact sports like soccer, basketball or football.

It also mentions having a session with an exercise physiologist to assess heart and lung strength and brainstorm age-appropriate activities and goals. Our goal is to have fun. Of course we don’t want to push our little buddy, but we want to give him more opportunity to run and play. A meeting with a physiologist seems ridiculous for a 1.5 year old. As it turns out, Ridiculous is my middle name. Totally looking into it.

Since Eli loses salt like mad we would just need to pay attention to see he gets extra, and also stays extra hydrated, and gets extra calories. All of these things are especially important for CFers.

Wish us luck on our latest endeavor inspired by little man.

Do you have exercise ideas, tips or tricks, or ideas for fun physical activities for tots? Let me know what you think by sending a note or leaving a comment below. xo. I’m always taking ideas for family-friendly fitness activities as well.

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