NDSC Convention

Hi folks!

Well, I just got back from Atlanta yesterday. I went down on Thursday night and came home yesterday afternoon. I was attending the National Down Syndrome Congress Convention. This is the time that families, self-advocates, and professionals gather together to share experiences and research regarding Down syndrome. It is an amazing time! There is so much love for our children and there is so much desire to make sure that our children are given the same opportunities as "typical" children. I am amazed each time how much the diagnosis of Down syndrome does not get any of these kids down (no pun intended)! If anything, it gives them a stronger desire to prove everyone wrong. Things may take longer to complete, but you know what? They complete it!

So, even though we have hit some major bumps in the road with Ethan's development, he WILL get there because he is determined and strong-willed! Now, I still have a hard time with the fact that one day Ethan will probably want to move away from home. I was able to meet Sujeet and Carrie Bergeron-Desai; a beautiful young couple who were just married two weeks ago. Oh, and they both have Down syndrome. They live in their own apartment in Rome, NY. It's still too soon for me to imagine Ethan getting married, but when you see the love that "Suj" and Carrie have for each other, I know that it is definitely a dream that I am going to have for Ethan.



There is so much, but I am going to leave the technical stuff to me and leave you with a few pictures. The young man is Steven Sauter from upstate NY. I met him and his parents at the last conference and was lucky enough to see them again. Steven is such a romantic and has the sweetest soul. It is always a joy to see him! I am sure him telling me that I am beautiful didn't hurt either! :-) To see other pictures, you can go to our Shutterfly picture album (if you don't know what that is, then you are going to have to ask).

Happy 4th...a little late!

Well, Ethan came home on the 4th, but we skipped all the celebration. He was way too tired and honestly- I fell asleep at 9:30 I think. No cause for the fever except that he was neutrapenic (low infection-fighting cells). Scott and I have taken turns this week by staying home with him. He does not need to be around other kids with who knows what germs until we know that his blood counts are up! But, he has been in great spirits and getting better at pulling himself to stand on solid furniture like the sofa and his crib! He can get up in a second, he just needs to build the strength to realize that he can stand on his own too! It's a fear thing, I think...

I am going in on Saturday to give TWO pints of blood. Yep, that's the good thing about weighing more than most and being tall! LOL! Please give blood. Please. Without blood donations, Ethan would not be alive and so many others wouldn't either, so please, please, please. I hate needles too, but you get over it when you know that you could be saving up to 3 lives! Ok, off soapbox now.

Pirates 2 opens tomorrow!!! I can not wait! I need a babysitter though...CAPTAIN JACK! I am so ready for you! :-) Oh, and tomorrow is also my friend from childhood's big 3-0 birthday! Happy birthday Jen!

Oh, I have had a few people ask...To sum up: I went to the dermatologist (KIM, YOU NEED TO GO TOO!) and she recommended to have 5 biopsies on some moles. I had 3 of them a few weeks ago and got the results yesterday. I have to have 2 of them completely removed because they came back with moderate risk for developing skin cancer. Nothing to worry about. I will have them cut out and be done. Then next week I go in for the other two biopsies and then wait for those results. Fun times...

I think that is all! Phew!

Sorry it's been a while...

There really hasn't been anything exciting to talk about EXCEPT Ethan got glasses! And, does he look ever so handsome! See for yourself:



Now, don't you agree with me??? :-) He is doing extremely well with them. Scott and I thought that he was going to be pulling them off all the time, but he has barely messed with them! When we ask him in the morning if he is ready to put his glasses on, he just gives us a huge grin and then keeps his head steady so we can put them on straight! He is such a BIG boy!

So now that I have started you off with good news, here's the bad: We are getting ready to take Ethan in to the hospital. He has had a low-grade fever since yesterday and today he has not dropped below 101 all day. He looks puny and the doctor thinks that his blood counts may be low coming off of prednison (steroid) and vincristine (chemo). The good news off of all of this is that we went TWO months without being hospitalized AND in less than 8 weeks we will be done with chemo all together and on our road to full recovery! Keep Ethan in your prayers always. He's one tough cookie, but added support is always appreciated!

Before I go, HAPPY BIRTHDAY DARLENE!!! We love you!


We hope that you all have a great Fourth of July!
Much love to you all!
Kristen