A new way of life for our brave guy

Quick update

Just a quick update before we head out for a chest xray for the guys and more meetings with doctors. Yesterdays tests all went smoothly. Dr. Ackerman (world leading doctor on Long QT) told us that after tests Preston is in the lowest risk category and he would recommend NO treatment. That means Preston will NOT be doing the denervation surgery that Hayden will have done. However, it gives even more reason to want to remove the internal defibrillator that never needed to be implanted to begin with.

Preston has three options with that. One, is removing all parts of the device but that leaves a 1% chance for a "catastrophic" outcome while they use a laser to remove the lead (wire) to his heart. The second option is to remove the majority of the device but leave the lead behind. This is less risky but has the potential for other risks in the future for leaving a piece of foreign matter attached to his heart. The third option, is waiting another year and a half until he would have to have his battery changed anyway, and make the decision then. It's a lot to process and figure out. We have a final meeting today with the surgeon and we are hoping for some more clear answers. Thanks for all the messages on f.b., the texts, emails, and voicemails. I wish I could reply to each one. But know we are all so thankful for your prayers, thoughts, and support!

Our trip to the Mayo Clinic

Long Q-T... seemingly harmless words. But not so with the two most important men in my life. Since Preston was diagnosed when he was 25 and Hayden at birth, those little letters have caused nothing but havoc in our lives. But I have to say, after our trip to the Mayo Clinic this week we are all starting to see a little light at the end of the Long QT tunnel. In August when Hayden had his fourth syncopal episode we were at UCLA in his hospital room talking with our team of doctors about our options. One option being implanting an internal defibrillator, which is what Preston has. But we are understandably fearful of doing that since in 2007 Preston's device misfired, shocking his body 10 times causing irreversible damage to his heart. Another option that had been mentioned after Hayden's 3rd episode was brought up again, a new surgical procedure being done at the Mayo Clinic. We were told the leading authority of Long QT in the world, Dr. Ackerman was the man behind this new surgery. It's a denervation which involves cutting a nerve that is part of the sympathetic nervous system that leads to the heart. It would in essence keep Hayden's body from sending a signal of adrenaline to his heart, acting like a shield. It could mean that Hayden would never require an internal defibrillator, which was such encouraging news!

So, Monday morning we all flew out to frigid Rochester, Minnesota to meet with Dr. Ackerman and learn more about the procedure. I was so anxious about this meeting. The idea of having to make another hard decision on how to best keep Hayden safe was weighing heavily on my heart. But after 90 minutes of speaking with Dr. Ackerman all my fears and anxieties about making that decision seemed to disappear. We told him of Hayden's four episodes despite being on an aggressive dosage of beta blockers and of our very catastrophic family history. He looked over all of Hayden's medical reports, countless EKG's, and electrocardiograms and stated, "Hayden is as high risk of a patient as I have ever seen." That was so hard to hear as a mom whose been dealing with this day-to-day, trying to constantly keep things in perspective and not let this disorder define Hayden. That's when the emotions boiled over and I started crying. My very compassionate little guy came over and gave me a hug, a kiss, and his blankee.

Dr. Ackerman explained the denervation to us and it wasn't nearly as scary as we originally thought. They have performed 90 of the procedures, 35 on patients with Long QT. Of those 35 patients, none have had any episodes since they started doing the denervation 5 years ago. The youngest patient to have the denervation was a 6 week old, very different that what we had been told at UCLA that Hayden would be the youngest. The side effects we can absolutely count on are minimal and the more unlikely ones are not serious. The incision would be in Hayden's armpit and the procedure itself only takes 30 minutes with a 2 day stay at the Mayo clinic. The recovery is easy and Hayden would be back to his normal, active self in just a few weeks. After hearing all of the information, Preston and I both felt completely confident in our decision to go ahead with the surgery. We will most likely be going back the first week in January, once all of our busy holiday plans are behind us. Besides, it wasn't quite cold enough for our California blood in November so we thought the middle of winter would be much better! Ha!

Our trip could not have been a more positive and encouraging one! We thank everyone for their prayers and positive thoughts you sent with us to Minnesota. We are very excited about what Hayden's new future looks like. Sports and active play may not be out of the question anymore! Such fabulous news for our boy who is on turbo speed all the time!

Sigh. A super big, long, frustrated, saddened, SIGH.

Madelyn's homework today had to do with the character trait of the month- responsibility. They had some questions to answer about being responsible and the last question they were to draw a picture and then add a caption on what they were going to be more responsible about this month. This is what Madelyn did...

On the lighter side, I have a story about Madelyn that has made me laugh out loud every time I think about it. I want to document it so I don't forget...

My dad was putting both kids to bed on Friday and proceeded to tell them a "cloud story" which is a wonderful thing he started when April and I were young and the purpose of it is to make you calm and relaxed, and hopefully help you fall asleep. As my dad told the story he could tell the kids were relaxing more and sinking deeper into their pillows. When the story was done the kids remained quiet so my dad was certain they were asleep. Moments later Madelyn says, "Phew! That almost put me to sleep!" Well Madelyn, that was the whole point you silly girl!

Santa Barbara

Over Labor Day weekend Preston was away in Australia on a business trip so the kids and I decided last minute to head to Santa Barbara and escape the 100 degree weather and an empty house. We had a great time. My parents met us on Saturday, which made it even more special.

Despite having their own sleeper couch- we all preferred to sleep together

It was too cold for the beach so we hit our favorite S.B. park

Bike ride with Papa along the beach

And a great dinner at Piati- one of our favorites!

Oh Christmas balls!

This afternoon while getting some papers out of our safe Hayden happened to see something in the very back that caught his eye. Meanwhile, I'm going through a file folder of paperwork not realizing he is digging out our old Elf on the Shelf. Last year we switched "elf companies" so I had totally forgotten about this one. Hayden says, "Look Mommy, an Elf!" I was speechless. So here is my cover-up work the kids will find in the morning...

Thanks a lot you cheeky elf! We'll see if they find you now... Muahahahaha!

Back to school!

The kids are both back in school (sniff, sniff). We had a fabulous summer and I was reminded of what a great relationship Madelyn and Hayden have. Despite our fun-filled summer activities I think they were the happiest while at home playing together. Some of my favorite memories of summer will be hearing their little conversations while playing legos or school together. In fact, now that they have been in school for over a week I can tell they are missing each other. When I picked up Hayden today he said, "I wish Madelyn was always here when I was here." While in line to pick up our take-out dinner it was the first time they had really been together all day and I caught them hugging and kissing each other.

But it's back to the grind we go! With two drop-offs, two pick-ups, 10 sack lunches a week, 2 homework packets, 3hours of dance, 1 hour of karate, 1 hour of gymnastics, 1 hour of piano and hundreds of requests for play dates... is it fall break yet????

Hayden- Pre-K (rocking his new favorite motorcycle shirt, coveted Green Lantern lunchbox, new light-up shoes and his holter monitor)

Madelyn- 1st grader!