Tuesday, July 12, 2011

Annabel learns to throw....

This is Annabel's new found talent. She loves to throw the ball, basically any ball and any size. This ball in the video is a weighted ball, but when you toss her just a regular plastic ball she can even catch and toss it back. The little video is over 2 minutes so you can just watch the first part since it is repetitive. This is Rebekah her nurse encouraging her! The video was taken over the 4th of July weekend but I am just learning how to post the videos again.

A great appointment....

Today, yes today was a wonderful appointment. I can say in the last year I haven't really felt very positive. Today we visited with our GI doctor. We were lucky enough to get an appointment with him a year ago in May. This is when Annabel began her life on TPN/central line. With that came a dependence on TPN, nursing, several blood infections, way too many visits to ER and admissions, 6 new lines and the list could go on and on....But today we were told that she is now on 60% g-tube nutrition. I haven't blogged about it very much because in the last year we would make a few advances all to discontinue the feeds and go back to where we started. It has been a couple months since we began EleCare. We have continued increasing her feeds beginning at 15mls. and now up to 135mls. (4 1/2oz.). Today we will begin 5 oz. She is down to only 8 hours of TPN and no lipids due to such a large weight gain. They are cutting back the calories in her TPN also today. They have also adjusted her caloric intake to 800-900 calories vs. 1100 calories. When I heard the words 60% nutrition coming from being tube feed I had to fight back tears. I never want to look weak in front of the doctors. We have been told Annabel would probably be on TPN the rest of her sweet life. HOPE is what we were given today. To go back to a life of not being so dependant on other things that negatively affect her health.
The negative is that Annabel still continue to struggle with UTI's. She is on two IV's for the next 10 days. For anyone who follows Annabel's story this is just a way of life for her. But today, nothing can get us down. WE are so thankful for the HOPE that Annabel was given today! Thanks to everyone who continues to follow her story and pray for her. I am sorry for the lack of post but somedays she is just tired (or maybe mommy is the tired one!)
I am hoping the pictures show how happy we are with the good news!!! Meemaw came by for a visit.