7 weeks today

So I didn't hear from the person who is supposed to do the evaluation for home nursing. Hopefully I'll hear from her tomorrow. At first I was pretty against home nursing. But, after more than a week at home with Harlie on our own, I can definitely see some benefits. I have a ton of questions that would be best answered if someone could see what I'm talking about. So, we'll see what happens.

My pediatrician gave me the name and number of one of her patients that had a trach till she was two. I will try to call her tomorrow. It would be so nice to talk to someone else who has been through this before. Her daughter didn't have Goldenhar's, but she had the underdeveloped jaw (called Pierre-Robin) and they were able to do a procedure to expand her jaw enough to secure an airway that allowed them to remove the trach. We are hopeful that the same could be done for Harlie. The sooner that trach is out, the better for all of us.

I am told that most of the repair to the jaw is done after permanent teeth come in. As heart breaking as that is, we would much rather do what's best for Harlie long-term. Of course, I have already spoken to Dr. Magee (founder of Operation Smile, where I used to work). We had a good conversation over the phone when Harlie was about 2 weeks old. (For those of you that don't know, he is a cranio-facial reconstructive plastic surgeon.) I was feeling very overwhelmed and incredibly sad at the time and he made me feel better. So, as soon as we are able to make the trip to Norfolk, we'll go and see him and hopefully get some sort of plan.

After spending more than a week with Harlie at home, I can finally say that I'm getting to know her. She makes the funniest facial expressions! She was awake a lot today which was really nice. Well I wanted to post some pictures up, but the night has gotten away from me and now I have to go.

I hope you are all well and I'll talk to you soon!
Love,
Christy