Update on our sweet Kate

Our pediatrician recommended that we see an infectious disease Dr to talk about any other possible treatments for Kate. While there we discussed the antiviral medication gancicylovir. I had read some about it and it seemed to be used on babies that had much worse symptoms than Kate. Our doctor did a little research (even an infectious disease dr is not super familiar with how to treat this virus ) we decided to start the gancicylovir on Kate and she will have it orally for six months. The thought behind this is that is may stop or lessen the progression of the hearing loss to the left ear. In cmv, hearing loss progresses to the both ear approximately 50% of the time. There is also some research out there that the medicine can be beneficial for any developmental delays. We have to keep a close eye on the side effect of lowering her white blood cell count which could make her susceptible to infections. She now has been on the medication a week and a half. Each week she will have her white blood cell count and platelets measured to make sure they are ok. Last week they were great! And the research shows that if she will have a decrease in her wbc then most often it happens in the first two weeks. We are hoping for more good news this Thursday when we go back for another checkup.
The doctor wanted to do another sono of her brain to see that the small "bleed" they saw was either shrinking or gone. We did that last week. The bad news is that it isn't smaller or gone but the good news is that it isnt larger. It stayed the same. This was very discouraging for us and it seems that no one has an answer as to what these two spots are. The radiologist and neurologist recommend that she have a MRI done to explore these spots further. We were told that she may possibly have to be sedated for this procedure. The doctors office called back later that day to say that they are going to try to swaddle her up really tight and have me feed her right before the procedure to get her nice and asleep and possibly avoid the sedation. My nerves are a wreck at the thought of what these spots could be and her possibly having to be sedated. We go for the MRI on monday morning and then will meet with a neurologist within a few days to review it. At this point I think our pediatrician and the neurologist really have no idea what it is. I am pretty frustrated because it seems like we get a little good news and then another round of "bad" news again. I am finding it hard to stay strong for her. :(
Also last week rainbows united came out to our house to assess Kate. She qualifies for their services because of her hearing loss and cmv diagnosis. They have a whole team of physical therapists, occupational therapists, speech language pathologists, developmental experts, and motor therapists that work together to determine your childs needs and then come out and evaluate them. They are really a wonderful group of people. The motor therapist evaluated Kate last week and said she is looking right on track for her age. They really commented on her ability to track with her eyes and easily mover her head side to side. They noticed her bringing her hands to her mouth and said that was a really good sign developmentally. They did say because she is small that she will more than likely take a little longer to do things. She has a hard time with head control and I do not know if that is just because she is so small and doesnt have the muscles to do it yet or if it is a developmental issue from the cmv. 
I am really trying not to over analyze her and just let her be a little girl. The hardest part for me is not knowing if she is going to achieve these big milestones. I am hoping soon she has more head control while she is on her tummy and is able to lift her head straight up. I am also hoping to hear some cooing soon. She makes a few noises but sounds more like a whine than a true coo. Again, not sure if I am over analyzing her or expecting her to do things that she just isnt able to do yet. Such a frustrating thing:(
But she is just such a blessing to us. I love to see her eyes light up when she sees one of us. 
I will keep everyone up to date as soon as we have some new info next week.!