updates....

I got this shot of her sucking her thumb! I thought it was the cutest thing I have ever seen

I feel like this week has been a roller coaster. Lila has been cooing so well the past few days. We will just lay there and coo at each other. Her face is so cute when she coos. She purses those little lips and tries to get the sound out, you can tell she is so excited to find her new voice. She also has been sucking on her hands and thumbs. It's been really fun.
We got the test results back from genetics, they were normal. Exciting! But the doctor did say the test was like looking at a highway and you can only see every 100 yards so she might still have some syndrome. (frustrating) so the next step is to meet with genetics to see if she is displaying signs of a syndrome and then they can specifically check for that. The good news about that is they had a cancellation next week and so we get to see them sooner than we thought.
Dr. Filloux, our neurologist also said that he wasn't thinking cerebral palsy. I told him what the developmental Pediatrician said and he said that he didn't see any of the markers of it. He said that he has seen kids who you can tell at this age but he doesn't see that in Lila.
We had to see Nutrition this week. Lila has dropped off the charts for weight. They gave us pure fat to mix with the breast milk plus fortify it with formula to give her extra calories. If she doesn't start to gain weight than we will have to put in an NG tube. I don't want to put another little tube down her beautiful nose! How defeating. But we have been doing well in forcing her to eat. Hopefully on Wednesday when we weigh her they will decide that is not necessary.
We saw Dr Dries (the ophthalmologist) he said her eye looks good, no scar tissue or swelling. Her pressure in her eye is down so hopefully no glaucoma. He did say that we should be seeing more results by now though. When I asked if he thought that she wouldn't have sight he said he didn't know. Pretty devastating since he was so excited last time. The saving grace was Sherilyn our vision therapist, she said that she has seen kids like Lila all the time who have gone on to have vision. She said she was really excited for Lila's future.
We had all of the early intervention people this week. I really liked them. We will see vision about every week, physical therapy twice a month and Occupational once a month. Hopefully we will see something.
We found a contact that fit Lila's right eye really well, unfortunately she blinked it out and we couldn't find it. Luckily we had a spare, of the ones that don't fit as well, till the new one is reordered. The next day however she blinked out the left one, this was a little more serious. This is the really pricey one and due to a miscommunication we hadn't ordered a spare. This could take weeks, so Lila is literally blind in one eye as of right now. This makes me really scared for long lasting repercussions.
Life is just a never ending up and down. I was doing really well for a few days and now I am sinking again. This is really hard. I just adore this little kid so much, I want her to have all the opportunities in the world. I just keep thinking, wouldn't it be hilarious (and the most amazing miracle) if Lila is perfectly normal in the end ? Oh how I wish and pray.....

Side note: A half hour after I posted this post Quinn was playing with Cubbie and was crawling around on his hands and knees in the living room when he looked over onto the kitchen floor. Literally right there, where we have walked a thousand times, was Lila's contact. A day later and perfect, no tares or scratches. A miracle! What an answer to prayers.