I can see the wine...I just can't get to it!
It has been awhile since I put up an update on how Erin is doing, and with her recent Christening, Thanksgiving, and doctor visit, I thought this would be a good time to do one. I have so many pictures to put up that this update will take the form of several updates. Just keep scrolling down to see all the updates with the December 17 date. There are a total of four separate updates.
Life with Erin continues to get better and better. She seems to change every day, adding new tricks to her repertoire. Her out-sized personality continues to grow, and she is generally happy with very few fussy periods. The only times that she gets fussy is when she is tired. Beyond that, her face seems frozen in a permanent smile. Walking in the door and seeing her waiting with a huge smile are the best moments I have.
Erin can entertain herself, and enjoys lying in her jungle playground, playing with the hanging toys while talking away to herself. It is hysterical to watch her sometimes.
Erin seems to really love being around people. During dinner parties, she enjoys sitting in someone's lap taking in all of the conversation and action around the table. She enjoys seeing people who come to visit, and never seems to tire of being held.
As for her health, she is continuing to defy the odds and confound her doctors with her health. Her development in learning to use her right hand and overcoming any effects of the stroke has been excellent. Sheila and Priscilla have worked tirelessly with her to get her to focus on developing the same level of motor skills on her right side that she exhibits on her left. It isn't perfect yet, but unless you know what to look for, you couldn't tell that she might have an issue.
We had an appointment today with cardiologist Dr. Jeff Gossett to do her six month follow up (can it really be six months?). He was thrilled with her progress. She weighs 14.70 pounds, and is very long (ok, I can't remember the actual measurement). Her ekg was excellent, and her echo made him very happy. In short, for whatever reason, she is getting full flow from her pulmonary artery to her lungs. She continues to shunt blood from right to left, but there is very little if any leakage in either her pulmonary artery or the malformed tricuspid value. At this point, Jeff can rule out with virtual 100% certainty the most radical of heart procedures that she would need. This is a huge victory, as the procedure (known as a "fontan") would have potentially left Erin with what is known as a one-chamber heart (one chamber on the right side versus the normal two chambers), and would have a significant impact on her development, life expectancy, and quality of life.
Jeff tells us that we are now most likely into "years" when thinking about when she might need heart surgery of some fashion. It could be as simple as closing the ASD hole she has, or it could be the replacement of her defective tricuspid value. It is still open heart surgery with all the risks attendant to that type of surgery, but her odds are significantly better.
I spent some time walking Erin around the halls of the cardiac floor at Children's today as we waited for the results of her echo. I was struck by the differences in her in just a few short months. Today, she is alert, taking everything in with her eyes. She is very curious and wants to see and taste everything (especially fingers). She maintained her composure throughout the visit, never crying once until the very end when we had to wake her up to get her snowsuit on in order to leave. She was perfect throughout the echo, thanks in large part to Sheila who laid down with her and kept her entertained and calm.
We do plan on taking her to Scottsdale on December 26, maintaining the schedule we have kept for the past 11 years. We will spend most of January and perhaps a good bit of February in the warmer climate, although we will need to return to Chicago for an appointment for her RSV and other shots.
As we close 2008, a momentous year from a number of standpoints, we want to again thank everyone for their support, prayers, and well wishes for Erin and her health. This year featured the highest of highs and the lowest of lows, but ultimately everything is measured against the joy that Erin brings into our lives on a daily basis, and that makes it our best year ever. We wish everyone the happiest of holidays, and hope that 2009 brings the best year yet for all.
