Wednesday, November 10, 2010

Day 10

Here's an overview of Annie's progress after a week and a half of feeding therapy:

1. She willingly touches an empty spoon by leaning forward and either touching or biting it.
2. She is off the food pump during the day and receives boluses, bringing the 2 1/2 hr long feeding times down to about 1/2 hour or less.
3. She is able to sit at the table in her Activity Chair for 25 minutes at a time--me reading to her while she tastes and tries new foods.
4. Before feeding therapy, she would bite carrots and apple consistently, as well as occasionally bite Cheez-its, Ritz crackers, or goldfish. Now she does all of that, and is getting proficient at eating peanut butter from a spoon or dipped on a carrot or apple. Today she was also taking tiny bites of Pirate Booty, and then chewing and swallowing it.

She had been on 30% calories for a few days, with the thought that decreasing her calories would kick-start an appetite. Then we discovered from dietician, Kim, that one of her seizure meds, Banzel, is "the worst" at suppressing a person's appetite. So, we had to rethink our approach and expectations, with the understanding that because she may never have a huge appetite, self-feeding may take more time. But we know that things take time, eh?

All in all, I am encouraged by her progress, and feel like I finally have some tools to help her learn to eat again. Karen Quinn-Shea and Danielle Dolezal have been wise and patient coaches in helping Annie and I work on this. I would recommend them to anyone looking for help in overcoming feeding aversion issues.

It's interesting, as I was talking with one of the clinicians today, they said that when a decision is made to place a g-tube, there should be a plan in place as to when or how the g-tube comes out. In other words, let's not send kids home with g-tubes without some support in getting them off of them, if it's at all feasible. Now, in Annie's case, she gets so many meds, it seems like she will always have a g-tube--a reality I can deal with. She also has frequent episodes of seizure activity and medical low-points, all of which make having a g-tube almost a necessity. But, to be able to eat by mouth, with her family, at the dining room table, is such a quality of life issue, and I am very happy that we are closer to achieving that goal. Very happy.

And, very tired. Thanks again for all of your prayers. We know she has been virtually seizure-free and healthy and cooperative and patient because God has answered your prayers.



aunt rebecca said...

Prayer, without ceasing, sometimes seems to be out of the reach of possible.
When we get to heaven, perhaps we'll find that when we begin to pray, our cells somehow take over and continue the process so that it becomes truly "without ceasing."

At least I hope so.

Marilyn said...

Praise the Lord!

uncle jeff said...

God is good!

VERY good to hear the progress. :)

pam said...

Sermon today was on the persistent widow...persistent prayer...

Lord, we are persistently coming to your throne, asking again and again, for Annie's healing. Please, Lord, hear our prayers, please tire of our asking, and grant this healing.
In Jesus' precious name we pray,

jean said...

How many times did I read that story in Luke 18 when Bill was sick in the late '90's...and then, GOD ANSWERED my prayer and healed Bill!! Pam--it was the coolest thing in the whole world. God can heal supernaturally, completely, and suddenly--He can and He does. And it encourages me so much to read your prayer, and to know that you and so many others still pray for Annie's healing. It would be so awesome if He did that. Where would we have the party??!

pam said...

Safeco Field! -you would need that much room for all of the Believers and prayer warriors who will be Praising God with you!