Here we go.

Well here we go The first round of the testing is set to take place next week. The upside to all of this is that we don't have to go back to Sacred Heart to have the testing done it can all be done here in Moscow at Gritman Medical. In one day they are going to attempt to do an Echo to check his aortic valve & heart murmur. Once that is done they will attempt an ultrasound to check the position of his kidneys. Finally if he will tolerate it they will draw some more blood to check his calcium levels. We will see if it can all be done in one day but the hopes for it aren't that great since we know from past experience it doesn't start or end well. Once these test are done we will have to go back to Sacred Heart to speak with the geneticist about the results again.

When Ethan had to do his very first echo at Dornbeckers in Oregon they gave him a anesthetic to try and calm him down so they could do the echo. Well when they did he had an adverse sort of reaction to it in where he would not calm down in fact it ended up making him lethargic to the point were he would not eat all day long and we ended up in the emergency room at the end of the day because he wouldn't come out of it. Thank goodness he did around midnight. Little did we know at the time that this reaction might have been a part of having Williams Syndrome. They are still doing studies on the affect of anesthesia on WS children but in a case were 26 children ages 6 month to 19 under went 60 surgical and cardiac operations one child a 18 month baby had a adverse reaction to anesthetic. Needless to say that was the first and last time we let anyone give him a anesthetic. We now know we have to inform the doctors before a surgery to beaware of his past reactions and the fact he has WS.

Ethan has gotten better about being around doctors but he will still go into a crying fit even during a regular yearly check up. We have learned to just go with it after all this itme but when it comes to some one new having to work with him its hard to explan to them what is going to happen.

1 in 10,000

      Two weeks ago Kevin and I took Ethan to the Providence Sacred Heart Medical center in Spokane for the counseling and blood draw for some genetic testing. They did a test called Micro-array analysis which told us something we didn‘t expect. The results were that of several (26) deleted genes in the 7^th chromosome which leads to a disorder called Williams syndrome. This is what we were told was causing his developmental delay’s.

      It has been a little bit of a roller coaster of emotions going on in our house hold, but in the end Ethan has always been who he is and even with knowing what he has. It hasn’t changed a thing about him. He has always been our social, happy, music loving, smiling boy and he always will be. Williams syndrome is a little hard to explain but we were told to watch a 20/20 video done on Williams syndrome which we found to be a good short explanation into the disorder. So I posted a link under the Links to the 2 part you tube episode if you get a chance to watch it you might find a small understanding about WS.

      We still however don’t know a lot about how this is effecting Ethan at this time. As we have read many times in all the information about WS this was something that just happened. Nothing could have been done to prevent or know it would happen it is just a anomaly that occurs in development in about 1 in 10,000 births. There are still a lot more tests to be done on his heart (which he was born with the heart murmur), Kidneys, calcium intake and thyroids. None of this testing will be any fun for Ethan since he still has the wonderful dislike for any doctor. As he gets older even more testing will be added to the list to make sure he lives a health life. So as we go through all of these wonderful testing phases I will be posting things we learn here on the blog along with of course some family fun stuff.

Sorry!!

     I know, I know I am a very late on updating this blog thing. I cant help that we got busy having fun, being sick, forgetting passwords and losing my camera. Ok so I guess I have no excuse for being silly about not posting any stuff, but here it is now lol. Here are just a few pics of what we have been up to lately.

I maade this cow costume for him to wear as a manger animal for the x-mas pagent.

Ethan at the Benson farm with family haveing fun on his 5th Birthday.

Ethans 5th birthday party cake for his friends.

Don't mess with the boy and his tractor's.

There first project together building my birthday present a new bench for the porch.

The end product  love it.

Theres my boys i took this same picture in 2010 and it is so wonderful to see how much ethan has grown.

Our little man.