Update December 2003: May 17th, 2003. We will never, ever forget this day. Evan was finally decannulated! After 2 years, 2 months and 21 days, the trach was gone. The big day took place at Cincinnati Children's - my husband Mike pulled it out - I thought I was going to faint and Evan didn't even blink an eye! This happened at 7 a.m. and of course we were then on the phone calling our families by 7:15!
We did have trouble with his stoma in that it didn't close all the way by itself but Dr. Cotton took care of it on November 14th. Two weeks later there is still a scab but its wonderful not to hear air whistling thru the stoma (I really don't miss cleaning up the secretions that continued to come out!).
Evan started preschool in September at a county run Early Childhood Learning Center. It is a wonderful facility and we are so grateful that it is available to us. His teachers are so warm and loving as are the therapists. He goes 4 days a week for 3 hours each morning and he absolutely loves it. He was very intimidated by the other children when he first started because he was so isolated when he had the trach - he really had not had the chance to socialize but now he's running and playing with all the other kids and he's just having a ball. His teachers say that he's just blossomed since September. Our biggest hurdle right now is speech, but he does see the therapist at school once a week and we still go to private therapy once a week as well. He is very chatty - you just don't understand what he's saying!
Due to damage and scarring to his vocal cords, his voice is a bit breathy and quiet, but he can be loud when he wants to!!
We did have trouble with his stoma in that it didn't close all the way by itself but Dr. Cotton took care of it on November 14th. Two weeks later there is still a scab but its wonderful not to hear air whistling thru the stoma (I really don't miss cleaning up the secretions that continued to come out!).
Evan started preschool in September at a county run Early Childhood Learning Center. It is a wonderful facility and we are so grateful that it is available to us. His teachers are so warm and loving as are the therapists. He goes 4 days a week for 3 hours each morning and he absolutely loves it. He was very intimidated by the other children when he first started because he was so isolated when he had the trach - he really had not had the chance to socialize but now he's running and playing with all the other kids and he's just having a ball. His teachers say that he's just blossomed since September. Our biggest hurdle right now is speech, but he does see the therapist at school once a week and we still go to private therapy once a week as well. He is very chatty - you just don't understand what he's saying!
Due to damage and scarring to his vocal cords, his voice is a bit breathy and quiet, but he can be loud when he wants to!!
1 comment:
Wow...what a journey. It is hard to believe that Evan has been through all of this. He is such a miracle. I am glad he is a huge part of our lives.
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