chILD Conference

So we just got back from the 2008 chILD Conference. It was great to meet so many other parents who know exactly what we are going through with Matthew. There was only one other family from Indiana and they live close to Louisville. It's unfortunate that we have to come together under these circumstances; however, it was an education for all of us and a very emotional weekend.

We learned how the Foundation got started and where they'd like it to go. It's only been around for about 5 years so we hope to help in whatever we can to keep things moving along. There is so much more research that needs to be done to help our kiddos.

During a Family Round session we heard a brief snippit of everyone's personal journey with chILD...I'm pretty sure everyone cried. It was probably the most emotional part of the conference, although there were many other times, we felt and saw tears.

The top five rare lung disease doctors from around the country attended this conference and gave us all the opportunity to sit and discuss anything with them individually, in group discussion, and as a panel group. They answered questions and tried to clarify things that were confusing to us. These doctors are incredible, easily accessible, and very passionate about what they do. We are so fortunate that we found the Yahoo support site which led us to Dr. Lisa Young, as we might still be trying to figure out things out. She is the second one from the left.

We also inquired about taking Matthew to Colombia...it's been a concern because the elevation is a lot higher and the higher you go, the harder it is to breathe. Fortunately we spoke with the elevation expert, Dr. Deterding (far right). She is from Denver and as you know, elevation levels are a lot higher there. So anyway, she said that we should go...that Matthew will probably need oxygen 24/7 there, but that if we have the proper set-up and equipment, that we should not limit him from anything. We were very happy to get that news. We'll probably wait until he understands the whole oxygen thing a bit better though...because it will probably be difficult to get him to wear it all the time vs. only at night.

We met a lot of incredible people this weekend and we are truly blessed with new found friends. I only wish more parents could have come, although we know all too well that it's so difficult these days to travel with the economy the way it is.

So anyway, this was our weekend and we have to re-adjust to being home now so, more stepping stones later...God Bless!

Adjusting

Well the kids seem to be adjusting well to summer camp; Matthew did cry yesterday and today while getting out of the car but seemed to calm down pretty quickly. These last two days he's come out of class smiling...so I consider it a success! When your child has an illness it definately takes you to another level of paranoia, but it's so important to give your kids the same treatment as everyone else; if it's at all possible. Sara was supposed to go to the Zoo with her class and it was canceled because of the uncertainty of storms...(it of course did not rain) Oh well!

The nice thing about summer camp is that they will have these same teachers when they start school in the fall...BONUS! I love Three Rivers Montessori.

Letting Go...

Today mommy had to take a huge step in "Letting Go" of her baby boy. It was difficult. My daughter Sara has always been very independent and when she started school it was emotional, yes, but I knew she'd be ok. With Matthew, he's been through so much, and the thought of one more emotional hump for him to overcome was overwhelming for me.

Kids are resilient though, let me tell you. He's been going with me to and from school every day this past year to drop-off and pick-up Sara. So today, when it was time to drop them both off at school for summer camp, he put on his back-pack and followed his "sissy" out of the van, looked back at me with that little round face and said with a smile "BYE MIMMI". My heart skipped a beat.

I, of course, hung around to make sure he was really ok, that he wouldn't cry, throw up, or freak out...and to my amazement he never shed a tear! I finally left after an hour or so and I cried all the way home tears of joy! I called Rob, called my mom and then cried again. Matthew's teacher was kind enough to call me half way through to let me know how well he was doing (that was very nice of her). Anyway, I am so proud of him and Sara too because she is such a helper and very concerned always about how Matthew's doing.

So, I guess I was the wreck today and I'm sure this won't be the last time.

Just another stepping stone through life...lol