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 prett
y sure everyone cried. It was probably the most emotional part of the conference, although there were many other times, we felt and saw tears.
y 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 disc
uss 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.
uss 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 elev
ation 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.
ation 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.
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!
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