Wednesday, November 08, 2006

Heart Prognosis and A Visit From Some Friends (well...Family)...

Hello All,

We had our appointment at Sick Kids' today to track the heart murmur that's developed in Isaac. We found out that there is some thickening of Isaac's mitral valve and thickening in his aortic valve. Essencially, this is the build-up of GAG's that we've been expecting to take place.

Right now, there is not concern except for the fact that it will need to be watched continually for changes in the condition. As well, he'll have to have some heart meds before surgeries. The cardiology said that it's not severe right now but it's also not trivial.

The other minor concern, and something that we'll have to monitor as well, is the finding that the right ventricle chamber of his heart is 10% enlarged. The cardiologist assumes this is taking place because of the back flow into ventricle because of the problem with the mitral valve. If the chamber continues to become enlarged there will be more cause for concern.

Isaac did very well during his echocardiogram. The hospital was thinking that he might need t be sedated because the procedure takes about an hour for a full scan. Due to airway concerns, we decided not to use sedation and Isaac was awesome! He did the whole echo like a trooper and even helped his new friend, "Dr. Carlos." Carlos did a great job with Isaac and got things finished quickly. We were so proud!

The pictures attached are of Isaac's friend, Trey, who happens to be a child affected with MPS II, or Hunter's Syndrome. We met the family at the MPS conference in Collingwood in the summer. They are visiting us after a long and difficult trip to Duke University in North Carolina where they were having tests done that are to determine whether Trey needs a Cord Blood Transplant. They have stopped in to visit us for a few days before they head back to their home in BC.

Trey and Isaac play really well together and they love to spend time together. Trey's parents, Ryan and Deb, are wonderful people as well. We've only spent a few days together in total, but they already feel like close family members. They also have a little boy, Avery, that is Gabriel's age.

Ellen and I can't imagine the difficult times that Ryan and Deb are facing right now. The decision to have a Cord Blood Transplant can't be taken lightly because of the incredible risk involved. Please drop by their website (listed on the right) and send them some support by way of signing their guestbook. It's going to take a lot of hope, determination, and love to beat this disease and they need all the help they can get right now.

Finally, Elizabeth Witmer, our wonderful MPP that has changed the course of Isaac's life, is hoping to stop by to visit Isaac during one of his infusions. We can't wait to see her! She's a tremendous woman, incredibly compassionate and dedicated to her provincial constituents. She's truly made a difference for us and we can't think of how to thank her properly. We'll be sure to upload a photo of her with Isaac once we get to see her again.

Take Care,
The Isaac Foundation

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