Pacemaker Camp

On April 10 I will be doing a 5K run to support Children's Hospital in their quest to raise $30,000 in order to fund this years pacemaker camp. The race will be held in Hull at nantasket beach. This is very important to me. As you all know, Skyler has a pacemaker and this camp will offer her the chance to experience a weekend away without any activity restrictions. No one will tell her to "slow down" or "take it easy". She won't be reminded of her heart condition and she'll have an amazing opportunity to meet other children with the same issues as her.

I think it would be wonderful if all of you would consider running with us! The day is sure to be fun! There will be a live band, face painting, food, kite making, raffles and prizes. So even if you don't want to run/walk at least come out and enjoy the day.

Here are some links for more information. If you make a donation please be sure to say it's for Skyler.

To register to run/walk...

https://finishlineregistration.com/register.php?id=301&sms_ss=facebook&at_xt=4d7fe61a3d22ab7a%2C0

To make a donation in Skyler's honor....

https://howtohelp.childrenshospital.org/events/pfp/?ProfileID=JL0027&name=keepingthepace

Thank you!

What if???

Just for fun... my horoscope for this week.

Virgo

How long has it been since you were last touched by an angel? It would seem some deeply benevolent force is now watching over you. This week's outlook suggests there's kindness and compassion in the cosmic picture. Somehow, soon, you will be taken further away from a source of stress - and closer to a new reason to feel hopeful. You may be led in a number of ways from force of circumstance, to sudden coincidence to the direct intervention of a helpful, positive person who is clearly determined to ensure that you now finally leave a painful part of your past behind.

The more I tell people what is going on with Sky, the more I begin to think "What if..." I can't even imagine how life would be with three healthy children. No more health related stress, no more co-pays, deductibles, frequent doctor visits. No more expensive medications, surgeries, scars, or tears.

But what if she never was sick to begin with? Surely this ordeal has significantly shaped the person I am today, the person Skyler is and will be, and our family as a whole. What if she was healthy from the start? Perhaps I would not have gone to school to become a nurse. Perhaps Skyler wouldn't have the desire to become an electrophysiologist. Maybe Jessica, Elizabeth and Kayla wouldn't have learned to appreciate the fragility of life. Maybe we wouldn't have learned the all-to-forgotten lesson of pulling together as a family during stressful times, even when we thought we had pushed each other miles aways.

Everything happens for a reason, this I truly believe. So no matter what the outcome is, I know it's all for the best. So she might not be "cured". She may need more surgeries and more tears may be shed. My "what if's" tonight are not "what if she really is healthy?" Instead I question, "What if she never was sick to begin with?"

I'm not so sure my life would be as wonderful as it is now.

Not the news I was expecting to hear

Skyler had an appointment with her cardiologist this afternoon. I was expecting that her echocardiogram was going to show a decrease in heart function and that we'd set a date to have her leads surgically replaced. Boy was I ever wrong.

Let me back up a bit. Sky was diagnosed with cardiomyopathy at 6 months of age. Her genetic testing came back negative and her heart biopsy showed white cell infiltration. Though it was not definite, it was suspected that a virus caused the myopathy (by attacking the heart muscle). Usually when this is the case the child recovers within a year. Sky did not. She started medication and had a biventricular pacemaker implanted. She did very well with this treatment.

When her lead abruptly stopped working in December her heart function decreased and she had surgery to replace the whole system. So why now after having the pacemaker off for a few weeks has her heart function remained normal? Well, because we have literally lowered the pacemaker voltage slowly in hopes of minimizing her other symptoms. We also stopped it and turned it back on a couple times. Basically, we weaned her off of it without even realizing it. This prevented a sudden "shock" to her heart and allowed it to maintain its normal function. We also lowered one of her meds to see if that would help with the dizziness. It's odd, but we slowly weaned her from her treatment and never expected it to turn out this way. We thought for sure she'd have to have a new pacemaker right away. I was wrong.

So it is possible that it took Sky longer than normal to recover from viral cardiomyopathy and that she'll go on to live a normal healthy life. But I am not holding my breath. I am not getting my hopes up. Statistically the chances of this are small (That is my guess from all the reading I have done) and if it ends up being true I'd consider it a miracle.... and I am not a big believer in miraculous events.

What happens now? Her case will be presented at conference and a team of cardiologist and electrophysiologists will offer their opinions. I'll hear about that by next week, I hope. We go back next month for a repeat echo and if her function is down we'll definitely replace the leads and if it's still great..... Maybe then I'll get my hopes up a little.

testing

Just testing to see if anyone needs to sign into a Flickr account to view the photos or if Yahoo just opens the album.

http://www.flickr.com/photos/27523418@N05/