Wednesday, October 19, 2011

I've been meaning to write an update on Hunter lately but I guess I have been procrastinating. I know he has a trach but when I write about it and really think about it it kind of makes me a bit anxious.

We have not "loved" Hunter's ENT Dr. here in NM very much. She has no communication skills..and I'm not being picky, she really has none! His last appt with her in Aug. we had to pry information out of her. I am aware that until they look down his airway again it's hard to say what's going to happen and when etc etc. but at least say SOMETHING! We have decided we are going elsewhere for his care for his trach. Denver would be nice because of the proximity, however, Cincinnati is the best of the best when it comes to children's airway disorders. It's going to be expensive and I'm not sure how we'll even do it but we'll make it happen, even if it takes several trips (which it will). We know he is going to need a big surgery and potentially more than one even. I look forward to it and life with no trach but it terrifies me to have my sweet boy have surgery again. I wish I could swap places with him. I'm not sure we want to travel east in the winter months so we are thinking closer to spring that we will go to Cincinnati, but we are not for sure.

My next step is contacting the Dr.'s there and letting them know Hunter's background etc. They schedule kids out a few months I have been told since kid's from all over the world to there for their amazing work. So I am going to be working on an email that I will send to the Dr. there. I have been told they are great about getting back to emails. I will also be calling them. I have been wanting to do this for the past month but something about getting this ball rolling is making me nervous! I will be updating after I have contacted Cincinnati so stay tuned.

On another note...Hunter is learning so much lately..He is seriously like a little sponge soaking up every little bit of knowledge he can! He is doing great with his signing, he is so smart! I love him!! We even got to hear his voice a tiny bit as now he's been wearing a speech valve which allows the air he breathes out to go up through his vocal cords instead of his trach! It brings me to tears almost hearing my little man.

1 comment:

  1. Don't worry, everything is going to work out just fine. You're doing a wonderful job as a mom and advocate for Hunter. Love, Mom

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