the "s" word

I sat down to write this post today and instead wrote two others. I guess I am trying to delay the inevitable. Last month, Xavier was seen by his cardiologist and underwent a sedated echocardiogram to see how his heart has been doing since his surgery last October.

Overall it was a good appointment. Xavier is still not a fan of having his blood pressure taken, or his O2 saturation read, or being weighed and measured, or...you see where this is going, right? Let's just say Xavier likes the waiting room, but anything that involves a doctor or nurse is bad news. It is so hard to watch. I have been trying to talk to him in advance to know what to expect and we give check-ups to Elmo and "Bear", but so far nothing seems to ease his anxiety. Please leave me a comment if you have any ideas that might help keep him calm during appointments.

Giving check-ups. Listening to "Bear's" heart.

Anyway, I digress. Overall the appointment went well. Xavier's heart is looking good except for a collateral that has formed and is diverting his blood flow a bit. It isn't a huge concern at the moment, but will need to be closed prior to his next surgery because it can cause complications and delay recovery time. I was, however, taken a bit by surprise when his cardiologist began planning for his next surgery. Initially it had been discussed that Xavier's next surgery (the Fontan) would happen when he was three or four years old. I really thought I had at least another year before I had to think about it.

The plan now looks like Xavier will be headed to the Catherization lab in November or December in order to close the collateral, and then the Fontan will be early next Spring (after the cold/flu season has passed). Just talking about surgery makes me nervous. I'm not ready for it. I don't think I will ever be ready for it.  Matt tries to convince me that an earlier surgery is better. In Xavier's case, it means that he is doing well, and growing and gaining weight. It also means that he will be less likely to remember the surgery and hospital stay as he gets older. I try to remind myself of these things, but it is still difficult to know that in a few months I will be sending him into surgery again. Hate, hate, hate it!

In the meantime, however, I will be taking it day by day. Xavier is so full of life and energy right now (and two year old "spunk"). It certainly makes it easier to forget about the upcoming surgery and cath procedure.

running with a purpose

You may recall that I participated in a running challenge called the Million Mile March earlier this year where I had to run 100 miles during the month of March. I joined the Million Mile March, at the suggestion of my wonderful sister-in-law, in order to raise money for the Children's Heart Foundation. I was able to complete the 100 miles and raise over $300 for CHF! This was quite the accomplishment for me as I was still a very new runner at the time.

Running has become an important part of my life during the past year. Not only does it help me relieve some of the stress of raising a toddler with heart defects (trust me there is plenty of stress involved), but it provides me with a means of raising awareness of congenital heart defects. Xavier is the inspiration behind my running. We have been told by doctors that Xavier will face physical limitations as he gets older and will not be able to participate in cardio and endurance type activities, so I do it for him. When people ask me why I run (and like most runners, I hear the question often), I'm able to share Xavier's story with them.  I'm hopeful that maybe, just maybe, the message will be heard and others will find it in their hearts to help children like Xavier. I also use my running to fundraise when possible. In January 2013 I am running in the Tri-City Medical/Carlsbad Marathon to raise money for Mended Little Hearts. Mended Little Hearts is an organization that works on increasing awareness, raises money for pediatric cardiology research, and provides support to families impacted by congenital heart defects. Click here for more information on how you can help.

With Xavier after my first half-marathon.

 

 



quick summer recap...

We had a very busy summer and had something going on pretty much every week. (Let's just pretend that is the reason why it has been months since I've posted anything here. Haha!) This summer I ran two half-marathons (my first), we celebrated Xavier's second birthday, Xavier got his first "normal kid" stitches, we went to baseball games, went to Comic Con, had playdates with friends, attended my sister's wedding in Wisconsin, and vacationed in Las Vegas with Matt's family. Whew! I'm exhausted just thinking about everything we did. Now on to the real reason for this post...an excuse to share some pictures!

Watching the Tour de France with daddy. Don't forget to wear your helmet!

 

Never too young for Comic Con.

 

 

   Family <3

 

First time on an airplane!

 

Waiting for fireworks at the Padre game.

 If you ask him, he will tell you ALL about the fireworks.

Over...and over...and over...