Help me support others with heart disease!

I have been participating in the Jump Rope For Heart campaign at school. My donation page is http://jumphoopsgsa.kintera.org/bensbrokenheart

As we have learned about why we need to take care of our hearts, I developed a passion to support Jump Rope For Heart.

We have been taught that it is important to stay active and exercise so that our heart muscle is strong. We have also been taught that we have to eat healthy and stay away from the junk food. (Mom already tries to do that with me.)

For those that follow my blog, you know that I am a Congenital Heart Defect Warrior. At one week of age I had Coaractation of the Aorta repaired and since then have been monitored for a Bicuspid Aortic Valve with Stenosis. I am doing well as long as I exercise and eat healthy. I have met other children that have similar CHDs and they have had to have more surgeries or are weak and sick.

I am blessed, so that means I need to advocate for others.

We have to turn in our Sponsor Form Friday morning (February 7th) and I know I am late getting this out, but I also know that you care about those fighting heart disease and those born with heart defects.

Thank you in advance!

New Year Refocus

The last year or so has been an unfocused jumble. I have not stuck to a routine like I should and it has shown.

It does not matter what label the doctors put on me or whether I am considered to have issues. First and foremost, I am me. God made me just the way I am.

What my family knows is that I need structure and I need to learn discipline. Along with that, I need to refocus my exercise and dietary needs. When looking at what needs to be done written in black and white, the realization is that this will not be a small task. Fixing my diet will not be that hard because we haven’t strayed too far, the problem areas are the exercise and structure.

I was in Tae Kwon Do, but I quit last year. I had some problems I needed to work through and now I don’t want to go back just yet. So, we need to find something else to replace that structure and exercise.

As far as my health, my heart is stable. I have a bicuspid aortic valve with stenosis. Right now it is considered mild stenosis. This is nothing short of a miracle considering after the surgery for my coarctation we were told I would probably have to have at least an ablation by the time I was two.  

Dietary wise, I am hypoglycemic and my body does not process any artificial sugars. This means all natural for me. Plus, I have a few interesting allergies and sensitivities that make life interesting. Lactose intolerance, red and yellow dye allergies, and the list gets odder from there.

Here is to a refocused new year!

PT was good today...

I brought up to Sarah about Benji being very floppy and about Robyn mentioning Monday that his core muscles were weak. So we got core exercises going and she has shown me a few to do at home.

Sit ups on the exercise ball. We use a wooden puzzle and put the pieces on the floor behind him so he has to stretch backwards across the ball and get one piece at a time. He then sits up and puts the piece in the puzzle.

Leg lifts. This one we don't have nailed down yet, he's to lift a small ball between his feet straight up and back to his hands. (Not sure I am describing it correctly) I think I will need dad or one of the older girls to help me here. At least we have plenty of ball pit balls that are the perfect size for this one.

Swing Time. (We finally got the swing back up!) Aside from just the vestibular input he gets from swinging... we can use his swing to help strengthen those core muscles too. I need to get a rope or something that Benji can hold onto to pull himself to me while on his tummy in the swing. (we have a fabric sling swing)

There was another one, but I can't remember what it was. Anyhow... his arms are strong but his shoulders are not as strong. His legs are strong but his trunk is weak which causes his legs to fatigue. Plus with his feet... low arches and pronation... little man will overcome this.

I also had Sarah look at Benji's knee where he fell on Wednesday afternoon. She said that it appears to be a bone bruise but since he can put full weight on it and run and jump he should be fine. The swelling went away Wednesday night and she said to keep an eye on it since it was a little tender to the touch. If it swells back up then he will need an x-ray.

Swinging the afternoon away.

Benji enjoying his new swing. Having a little difficulty getting used to it as it requires him to use those core muscles that are weak with him.

Hopefully by the end of summer he will have it down pat. He is taking turns between the swing and the mini-trampoline.

He has come so far and we just want to keep encouraging him. I have a feeling our backyard is starting to look like a playground with a garden in it. LOL... It is what is needed though and the kids enjoy it. Gives us reason to stay home too. :-)