A Good Visit

As promised, I am back!  Ethan spent a long day down at Childrens in Boston to have a good look at his heart. Ryan took him down for the first time because I was too sick to go - morning sickness and a nasty cold.  It was actually the first time I have not been at one of Ethan's appointments so it was very difficult for me to ask Ryan to go. But, I knew it would be better for all of us if I stayed home.

All of Ethan's results were positive!!! Yay!!!! He had a Echocardiogram, EKG, Chest X-Ray, and a visit with the wonderful Dr. Lang.  It seems that the areas of stenosis - or narrowing - in the pulmonary valve are growing with him and his pressures in the chambers of his heart are remaining the same. This is huge news.  This means that his next open heart surgery and his first valve replacement will be able to be pushed back, possibly even as far as 6 years old or so.  There is always a chance that it will happen sooner, but his doctor is optimistic which is wonderful news for Ethan.  We will follow up again in 6 months and go through the same tests and will continue to do so for quite some time, but we are more than happy to do that.  We absolutely love our Doctors and nurses down in Boston and know that Ethan is getting the best care and treatment and when they are confidant, we know that we can also be confident.

In other news, Ethan is starting to make some really good progress with eating.  He is actually swallowing food these days!  Cheese, mashed potatoes, broccoli, bread, and fish.  He is loving it and at some meals has even taken in about a tablespoon of food with out throwing it back up. I know that does not sound like a lot, but it is a HUGE improvement from where we were even a month ago, let alone a year ago.  It is something we have been working on with him since the day he arrived home so it has been a very long and journey, but for the first time, we are actually seeing progress and are hopeful that he can make some good progress.  Most of his food he gets through his G-Tube in the form of a toddler type formula.  In the spring, when he is healthy we are going to work more closely with our feeding a nutrition specialists and will actually cut Ethan's calories down in the hope that he will compensate for the calories though oral feedings.  We will watch his weight closely and adjust as needed.  It will be a huge step for him and one we actually feel he will be ready for.

I feel as though most of what I write about is Ethan and I feel sorry for Kevin a bit because he gets left out a little.  He is a superstar of a toddler and has been developing so well.  He has really been a major factor in Ethan's developmental accomplishments.  He is always pushing Ethan to do more and to keep up with him.  He will not just let Ethan walk, but wants him to run. He does 24 piece jigsaw puzzles so Ethan can now do 24 piece jigsaw puzzles. They really feed off of each other so much and I really believe that one of Ethan's biggest blessing in life has been Kevin.  Kevin is also very emotionally aware and will comfort Ethan when he is sad or hurt.  I am not sure if I have seen anything sweeter than Kevin going right up to a sad Ethan and bending over, patting him on the back and saying "okay E, okay" with a look of genuine concern on his face.

I find it funny because everyone warned me about the "terrible twos"  and so far, I have found it far from that.  Don't get me wrong, there are difficult days, moments. But for the most part this phase of discovery, mobility, and verbalization has proven to be one of the most fulfilling and special times for us and the boys.  They have really become so independent and take such pride in their accomplishments it is such a joy to watch them each day.

Watching Daddy snowplow us out of the blizzard!