Saturday, October 13, 2007


Noah has made some HUGE improvements this week! He has started eating 3-4 oz by mouth and being able to go about 3 to 3 1/2 hrs between feedings (longer at night). This is really good because since I took out his NG tube, he has only been eating about 1 1/2 ozs every 2 hours, even at night.

Today, Noah also ROLLED OVER for the first time!!!! I couldn't believe he did it. He also finally started reaching for toys. Shane brought Lilly's play gym so we could hang some toys up for him. He laid under it and reached and grabbed the toys for over an hour. Just as content and happy as can be. I think that since he's eating more now, he finally has the energy to do these extra things.

His swallow study is on Friday so we can learn more about his lungs. I hope that his aspiration has stopped by then but we'll see. I'm not going to stress about it until we have more data. Then we can make a decision. All I care about right now is that he is doing SO GOOD!!!

When we go home (IN TWO WEEKS!!!!) our new Transplant Cardiologist will be Dr. Everett and our Transplant Coordinator will be Emily. They just happen to be in town next week to see the new hospital and learn more about how Childrens does their transplant program. And it just so happens that Dr. Miyamoto (Noah's current Transplant Cardiologist) is friends with Dr. Everett. (Dr. Everett was the one who sat down with us and told us that Noah would need a transplant. She was VERY compassionate. I think we will like working with her.) Anyways... the point of mentioning this is because they will be coming to Noah's next Clinic Appointment on Monday. I'm really hoping that they agree to work closely with Childrens in Noah's care. I've come to really trust Dr. Pietra and Allison and don't want to lose the history that we have. Plus... there are only a few other people in the Country with as much experience as Dr. Pietra. So I definitely want the best for my little man.

I've posted more pictures on my Flickr website. So definitely go check them out. The link is off to the left title My Pictures.


  1. Dear Crystal, Shane, Lily and Jenny,
    Just wanted you to know that we, too, are excited about you being able to go to SLC together and feel secure in your own home. You have all been real troupers and such an inspiration to the rest of us. We feel your faith and testimony each time we read another update on Noah. He is such a cutie. He is rolling over earlier than any of our babies did, so you can see that he, too, has a strong spirit and will power to succeed. All will be well!!!
    Have a good trip home and know that we love you all.
    Aunt Marilyn and Uncle Bill

  2. How wonderful! It doesn't seem that being sick has delayed him at all! He is feeling better and ready to get into everything, huh? :)


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