Aja Update!

I thought I would post a quick update and let everyone know how Aja is doing.

Since her surgery, Aja has started with her newborn reflexes. She opens and closes her hands and kicks her little legs around. Before she would just kind of sit there and not move too much. She LOVES looking up. She does it all the time. It's kind of like a whole new world for her up there. She is working on her smile too, it's so cute! She has also found her little voice and uses it often! She has been keeping me pretty busy with holding her. I have to hold her CONSTANTLY. Her head circumference has gone down from 41.5 cm to 37.5 cm!! YAY! She looks so good. I don't have any recent pictures uploaded, but will have some posted soon.

A lot of people have asked me if she will have long term effects from this so here you go:

Since she was born with this condition (we are about 90% certain that she had it in utero) the chances of her having a mental disability are 30%. Before the shunt procedure was invented, the chance of death was 54% now it is down to 5%. The chances of mental disability before were 62% and now down to 30%. So the chance of her having a problem are still kind of high. Any shunt revisions she has ups that percentage as well. This has been one of the biggest concerns for us since her diagnosis, but we have really educated ourselves and have some evaluators coming in to start her on physical therapy when she turns 1 month. We are also researching different support groups for us to join so that we can maybe help anyone else that goes through this and to find support for Mitch and me.

So far though, Aja seems pretty much like any newborn. We won't be able to tell if anything is going on with her until she starts reaching her milestones. Either way we are preparing ourselves for whatever outcome she may have.

As for the other kids, they are doing okay with it. The person who seems most affected by this whole thing (besides us and Aja of course) is Cohen. I feel bad that I can't be there more for him as much as I could before. It's been really hard for me to watch him pull himself away from me and start clinging to Mitch. It's great for Mitch, but it breaks my heart. I'm hoping that we can get on some sort of schedule soon (it has all flown out the window with this thing) so that I can go back to doing what I was with him and so he won't feel so left out.

Anyway, I thought you would find that interesting. It's not an easy condition to deal with as it's a wait and see game and any sign of a shunt malfunction means we have to run down to SLC as fast as we can to avoid any more brain damage. It has been really hard on Mitch and me to go through this as we are terrified right now of missing any signs of a shunt malfunction, but we deal with it a day at a time right now and rely on each other a lot.