GREAT news, new diagnosis,new questions

WOW!

Where do I begin?

Yesterday was a very long day. We woke the kids and put them in the van at 4am. We drove to Atlanta for Lilah's appointment, took them to the aquarium, and made it back home at 10:30pm.



Normally Aaron and I take Lilah alone. Normally we are so full of emotion and do not really know what to think, say, or feel. This time we added the kids to the mix, so we are still recovering from the trip; not to mention Aaron had a surgery today.

Okay, so I have tons to tell about Lilah's visit with Dr. Lee.

• Both of Lilah's corneas are clearer! PRAISE GOD!
• Lilah's pressures were great. (18,19) AND she was fighting so they were probably even lower than that.
• Dr. Lee does not see any Nystagmus (yet) in Lilah's eyes. (Another Praise!)
• No Glaucoma is present right now.(Another praise!)
• I asked what Lilah's visual acuity is right now and he said "20/100 in both eyes"
• Lilah's diagnosis has been changed:

Dr. Lee said that patients who have Peters Anomaly do not normally have corneas that clear without transplant surgery. He has changed Lilah's diagnosis to Anterior Segment Dysgenesis.

Dr. Lee said that if Lilah does have Peters, it is an extremely mild case. He said that certain parts of Lilah's eyes did not form properly. I asked him a million and one questions. I told him that I had heard that Glaucoma can be present, even if pressures are good, and still cause damage. He said that Glaucoma is not a perfect science and that the only information they really know for sure is that one way to stop the symptoms is to control the pressures. I told him that I wanted to know if Lilah's retinas and other parts of her eyes were okay. I told him that Lilah had an ultrasound of her retinas at 12 weeks at Dr.D's office, (and they were good)but I wanted to know if there was any unseen, unknown damage. I also asked if she would need glasses, and when.

I asked and asked and asked.

When he was finished examining her, and as we asked questions, I sat Lilah up facing him on my lap. The entire time we talked, Dr. Lee stared at her and at one point said, "See she's looking right at me. She can see me!"

This is what our next steps are:

• Keep Lilah's pressures under control by giving her the Trusopt drops 2x a day(Glaucoma is still the largest side effect and could take what sight she does have)
• Keep strengthening the muscles of the eyes by stimulating her with lighted toys
• We go back to see him on 7/30/09
• Soon Dr. Lee will want to do a procedure on Lilah where he will put her to sleep and do a much more thorough exam of the eyes. He said this would tell us her prescription and if and where there is any damage
• CONTINUE to pray daily for complete healing

Dr. Lee said, "I know I say it each time you are here, but it is unbelievable how well she is doing." He said he is still amazed at her progress. THANK YOU LORD!!!

The best part of the visit was when he told us that Lilah's left eye is near perfect and will not need transplant surgery. He is still not sure whether he will need to do the transplant on the right. But she can see something out of both. He said she will definitely have vision in her left eye and at worst be legally blind in her right. That is incredible news!!!

Aaron and I are beyond grateful for the prayers. They are working and the Lord is hearing and answering them all. Thank you for your continued support, love, and prayers. We serve an amazing God!!


I told Dr. Lee that Lilah is our miracle baby. He said, "She sure is. Take care of your miracle!"