Postscript - Friday, May 24 2013

Erin had her follow up appointment with Dr Jeff on Wednesday.  We were understandably nervous after our last appointment, wondering what new hiccup we would encounter next.

It started with an x-ray, where they put her in a small chair that sits up high in order to get the proper angle.  The technician remarked that Erin is the first child that hasn't cried going into the chair.  Actually, she loves it because she pretends it is a throne and she is the queen.  She's a pro at all of these tests now.

After the standard stats like height, weight, etc, Jeff walked in and announced that the x-ray was clear.  She sounded good, and he was very happy with her progress.  He then sent her for an echo to get a better look.  When we reconvened, he said that she still has a slight amount of effusion on both sides near her lungs, and a small amount around the heart, but he considered it normal for the surgery she had.  He reminded us that going on the heart lung machine makes anyone "leaky" for fluid buildup as a natural byproduct, and that she was going to have a small amount just from that.  She continues on her medicine, albeit for a reduced dose.  He thinks she will be on it for 3 - 6 months.

Sheila was excited to hear that Erin can now go to altitude, meaning that we can take her skiing.  Since her birth, she has been unable to go to high altitudes due to her low blood oxygen levels, now a thing of the past.  Overall, it was an excellent appointment and she doesn't have to see Jeff for two weeks.

When we originally scheduled Erin's surgery, it was for early June.  Sheila subsequently wanted to change the date to May, in order to give Erin a better summer.  I was against the change, as I didn't want her missing school, and I felt her recovery was going to be such that the summer was shot either way.  Who could recover from open heart surgery in a few weeks, and have their energy and enthusiasm back?  As it turns out, Sheila made the correct call, as Erin is seemingly back to normal.  She starts summer camp on June 10, and can't wait.  She is already bored, and misses school.  She does get a little tired, and getting her to bed is easy (a nice side benefit).  But other than that, you wouldn't know she had anything done, unless you saw her bandage.

I am concerned that she will be upset when she sees her scar.  There is nothing we can do about it, and hopefully she will take it in stride.  She was concerned last night about the steri-strip bandage coming off.  She is worried that it will be a painful ordeal, like taking out the tubes.  She was relieved to find out it will merely fall off.

More than likely, this will be the last blog entry.  I'm glad.  I find these to be very challenging to write, and a constant reminder of Erin's challenges.  I hope that someday she will read these entries and come away with a renewed sense of who she is...an incredibly strong, resilient and amazing individual.  I think she will have a very deep sense of pride over what she has overcome, and the way she did it.  I know I have the ultimate bias, but I find the way that she has handled everything to be absolutely remarkable.  She will have more issues ahead, as this is a lifelong condition, but I know she can and will handle them well and with grace.

In some ways it seems like a lifetime ago, 5 years next month when I started writing these blogs to keep family informed of what was happening on a daily basis as Erin struggled at birth.  There were daily ups and downs and medical emergencies that needed communicating, and this seemed like a great option.  It morphed into so much more, albeit unintentionally.  It is a record of an important part of her life, one that will have a lasting impact on who she is.  It was cathartic at times to put down on paper the issues and feelings that have had more ups and downs than the largest roller coaster.  And finally, it has proved to be an outlet for thoughts that I would ordinarily never share, given my very private nature.

I have to close by one again thanking anyone who took the time to read this for their caring, love and support.  We have been continuously amazed by the outpouring of support that we have received, and how widely read this blog has become.  New entries routinely garner a 100 page views in no time, which is startling.  Total pageviews passed 10,000 a long time ago.  For Erin's benefit, I have saved every single e-mail and note from the time of her birth to include as a record for her.  I have a saved e-mail folder with countless notes of support and encouragement for Erin that she will someday read.  Many are from people she will never know.  More astounding to me are the notes we receive from individuals that neither Sheila nor I know, who somehow stumbled across Erin's blog by accident and keep following her story.

Michael Jordan once told me that the greatest gift he ever received was the gift of confidence and self-esteem from his parents.  I can't help but think that someday reading all of the notes of love and support will have a positive impact on Erin's self-esteem.  In an increasingly challenging world to grow up in, that will be a good thing.