My Story

Welcome to Sawyer's CaringBridge site! Sawyer was born with Hirschsprung's Disease and was later diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). He has been through a lot and is still in the process of getting everything "figured out." Click on "Read Story" to read about everything!


Journal

Monday, November 10, 2008 8:10 PM, CST


Quickie update on Sawyer since it has been awhile. We have started using his cecostomy tube nightly and it is going so much easier than we had anticipated! Sawyer is able to open it up and put the connecting tube in himself. We then let the bag drain and he takes out the tube and closes it himself! He then sits on the toilet for about 40 minutes and he cleans out. It hasnt been the struggle that we thought would happen. I think he was ready for something as I think even he was tired of the soiling and constantly worrying about going to the bathroom. We will do the cecostomy tube daily until probably the summer and then see if he has matured enough to recognize the cues that his body has. We shall see.

He is also due for a neuroblastoma check since it has been a bit over a year. We will probably have that done in the next month or so.

So, just a quick little update on Sawyer - again, he is doing great in school and loves going every day and of course, is super excited for his upcoming 6th birthday!


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E-MAIL AUTHOR

avondra75@yahoo.com

HOSPITAL INFORMATION

Childrens Hospital - Seattle