see below 1st...part 2. more on my eye ( long post again :)

So I had been having these monthly treatments and they were working, but not only are they painful and expensive, they also shut off a process in the eye that is natural...and they don't really have a lot of data to show long term effects (this drug is usually meant to treat elderly people with wet macular degeneration).

the bony tumors can crack and up through the cracks blood vessels grow and eventually they leak due to the limited amount of space there...that is what causes the vision changes, and bleeding. so that is what makes this like wet macular degeneration.

so we were going along with pretty much monthly treatments to my right eye...and had a few bleeds and kind of a rocky road...but in October we made the decision to not treat...and I didn't have an injection or 3 months. Then in Jan. of 2008 I had an area...a "freckle" that he was concerned about...we decided to treat before it bled. I had an injection in jan, but in feb when I went in, it had bled anyway. So now the blood is starting to re-absorb, but still had a treatment this month.

Ok...how I feel about all of the above...
Before Jan, I was really putting a lot of my faith in Lucentis (the drug), Dr Jordan, etc. but I realized that as much as we/I want things to work out...no bleeding, no treatments, etc. I have no guarantee. I was really devastated when I had to get a treatment in Jan...I just wasn't expecting it at all...I really thought I had put it behind me. But God had other plans. I didn't understand them, but He did. I really think that this is more about God's challenge to me (&Dean) to put our faith in him, that he cares much more about my vision in my right eye than Dr. Jordan, or even we ever could. I feel like this is the journey that He has given me to trust him and his plan for us.
The other element to this journey is that pregnancy and Lucetis are not compatible. Lucentis is an endothelial cell growth inhibitor...big fancy name for ... it prevents the growth of new blood vessels. So of course since pregnancy involves the creation of new blood vessels, and they have not studied this drug in that setting, they have no idea if the drug would cross over to a baby or not. Now, this does not mean we have given up on having kids, we just have given that to God too. If it is his perfect will for us to have kids, he will provide a way. So, that is where we are at these days.
I have been listening to a radio program in the mornings called "revive our hearts" it is specifically aimed towards women...and they were covering the Lord's prayer. The one line that struck me is "thy will be done" we cannot pray that prayer, and retain our own will. And sometimes God's will won't mesh with what we think we want...but like she said...it would be our will if we knew what God knows if we have a heart that is softened to God's calling in our lives.
So basically, we are trusting that God has a better plan than us, and if it includes going blind, or not having our own biological kids, we may struggle with that, but in the end it will be the very best for us...because it is His will.
(I do realize that this sounds crazy and many people would not understand that at all, but I am ok with that...it is my journey)