This is Lilyana's heart drawn by her cardiologist. the mirror image of ours. This is the latest drawing, you can see where all the dark scribbles are, that would be our problem area. the circled valve on the right hand side is the valve we are talking about using for a valve replacement. Oh, and to correct my blog below, she can have an artifical valve replacement, but she would out grow of it to quickly and end up having to go back in to have another OHS to do another replacement valve. So, if we are going to use an artifical valve, we want to wait until she is at least 2 or 3 years old I think, so the valve will last a little bit longer until we have to replace it again. This is the reason she will be having OHS for the rest of her life! If you have any questions, feel free to ask me!Monday, September 22, 2008
Lily's Heart Drawn by Dr. Rhee
This is Lilyana's heart drawn by her cardiologist. the mirror image of ours. This is the latest drawing, you can see where all the dark scribbles are, that would be our problem area. the circled valve on the right hand side is the valve we are talking about using for a valve replacement. Oh, and to correct my blog below, she can have an artifical valve replacement, but she would out grow of it to quickly and end up having to go back in to have another OHS to do another replacement valve. So, if we are going to use an artifical valve, we want to wait until she is at least 2 or 3 years old I think, so the valve will last a little bit longer until we have to replace it again. This is the reason she will be having OHS for the rest of her life! If you have any questions, feel free to ask me!
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2 comments:
Hi,
My name is Chris. Searching the web for Consider the Lilies came upon your blog. I know I'm not a relative, but I am a christian brother from KY. Was extremely moved and tremendously blessed by the pictures of little Lilly. My heart was moved with compassion
My wife and I have a little girl named Anna Grace who will be 3 on September 29th.
I can only imagine tremendous, colossal faith it has taken to have taken thus far.
It's my hope that this finds Lily well. We bless you in the name of the Lord.
Hi my name is Rana Manzi. my myspace is http://www.mysapce.com/boombaz (I'm one of your friends) and my son Marcelo is a heart baby and his carepage is http://www.carepages.com/marcelosheart
I've been following Lyliana's progress. I just wanted to give you (some) posiible piece of mind for the future of our heart children. I read in this blog you mentioned her having OHS's all her life because of valve changes. OUr son Marcelo if he ends up having the Rastelli procedure @ 4 years old he'll need periodic vale changes to. BUT, I wanted to tell you(if you didn't already know) about a product on the market that is made in Irvine, CA (near my home) called the Medtronic Transcatheter Valve Replacement System. It is already in use in Europe, Canada and Isreal. It makes valve replacement via OHS a thing of the past, becasu eit can be done via cath procedure. Right now it is in Clinical Trials @ Miami Children's Hosptial and might be a wonderful advancement to ease the life of our heart babies when they come to need a new valve replacement in the next few years. So, anyhoo I wanted to chime in with that info. fo r you. I figure us heart moms should stick together and give info. when we can.l I am also on facebook under my name Rana Manzi. I use facebook most.
So, have a good night. I hope Lyliana is doign well.
God Bless,
Rana Manzi
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