Meet the McNeil Family

Meet the McNeil Family

Wednesday, January 19, 2011


Tomorrow morning we are taking Waverly in to see her G/I specialist.  We haven't met with him since her most recent swallow study.  Even with the changes we have made to her diet (i.e. pureeing food and using Simply Thick), she is continuing to have difficulties eating.  Last week she started holding liquid in her mouth for a longer period of time and her tongue is getting in the way more often.

I know he will want to discuss a feeding tube.  I don't think we need to proceed yet, but I know that it is something we will eventually have to consider.  I wanted to have this meeting so I could become informed on what the surgery is like to place the tube and exactly what life will look like when it is time.  It is not going to be an easy appointment, but it is necessary.

Having a child lose the ability to feed herself and even swallow is exactly why I need all of you to VOTE. And then take the next step and ask your friends to join you.  We have to fund this research project, to get us closer to find an effective treatment and cure.


Anonymous said...

Shannon - I am so sorry to hear this. I will be thinking and praying for you guys tomorrow that you'll have certainty and peace on what steps are necessary and when. Still praying for sleep for your beautiful children and hope the beds are working out great!


Lisa L said...

I just want you to know.. the feeding tube is easy to take care of , and easy to administer nutrition. Love to you all...

Anonymous said...

Another heartbreaking step in this heartbreaking disease ... Voting every day, and praying for your family and your beautiful children every day.

The Leivas said...

You guys are in my thoughts. I hope you are able to have a productive appointment!