Tuesday, February 16, 2010

Change in plans

I just wanted to say thank you for praying, especially for wisdom and direction for the doctors...Emily's surgery has been cancelled for now! Things are falling into place - Emily's cardiologist is working to find a doctor so we can get a second opinion on how to best treat her knee arteriovenous malformations (avm). We're feeling frustrated as we'd like to get this taken care of, but we're also feeling relieved as well!
Thanks for your love and prayers!

Sunday, January 31, 2010

Time for an update

Sorry I haven't posted in awhile....Emily is doing well! She is enjoying the new homeschool co-op, taking spanish and drama. She is in her element in drama class, using her british accent with purpose now! She's made some new friends there and through the church. Her oxygen sats are the same and she remains on oxygen 24/7 with a few hour 'break' during the day. She had an appointment with the cardiologist - it was nice to have only a 40 min drive to get there :) The echo showed great heart function...Praise God!! We also made a trip to Cincinnati Children's Hospital for 3 days in December; she had a couple of appointments with the team of doctors that are following her there. The hematologist is still investigating the bleeding issues, her tests are coming back "unusual" but he still feels that she has some form of acquired von Willebrand disease - a blood clotting disorder. Thankfully, she has not had any new episodes of bleeding from her gums or her knee. She also had a liver ultrasound and a MRI/MRA for both knees. The plan right now is to have sclerotherapy for the arteriovenous malformation (avm) on her left knee. Sclerotherapy is a procedure to treat vessel malformations by injecting a solution into them to help them shrink. The surgery is scheduled for Feb. 22. They won't be able to do it the traditional way on Emily and this procedure has not been performed extensively this way. We are so grateful that you have been there to lift Emily/us up in prayer and we ask that you please continue to pray for wisdom/skill for the doctors. Pray that this would be the best plan of action, and best place for Emily to be. Pray also that we would have clarity and peace of mind. Thank you all so much for your love and continued support - we love you!!