Sunday, April 03, 2011

Catherine in Seattle

Well, it's official. Catherine will be doing a feeding tube wean at the end of this month with some help from Karen, an occuaptional therapist in Seattle! We'll be there for 2 weeks and hopefully at the end she'll be taking significantly more by mouth, Karen says possibly 50%. What will happen basically is that we will cut her tube feedings starting about 5-6 days before we leave, so that when we get there she will be at about 50% of her normal tube intake and then we'll cut further until she's getting only one feed per day and we'll wait and surround her with food. She will continue to get fluids so that she doesn't get dehydrated and her weight will be monitored. I am hoping to blog each day for my own records but also for the information of other parents who are going through the same thing. I can't tell you how many tube weaning stories I've read, but I've learned something from each of them and am so grateful to the parents who took the time to record their journey. Maybe someone down the road will learn something from Catherine's story.

We would most definitely appreciate your prayers! We continue to pray for all of you.


2 comments:

Patience said...

I will continue to keep her and all of you in my prayers. It sounds so exciting that you'll get the help and support you need for this to happen!
Is there hope that eventually she'll be able to completely lose the tube?

Nicole said...

Thank you for your prayers, Patience. There is a lot of hope that she will be able to get rid of the tube. There is no medical reason that she needs it now, she just has never experienced hunger and doesn't know what eating is for.

The Smallest Act of Love