Thursday, August 14, 2008
Needing her beauty rest...
I want to begin by thanking each and everyone who has been praying for Magdalena and her family. She is doing good at this time and praying for more time if that is God's plan. Please continue to keep them in your prayers.
Overall Annabel has seemed to be doing ok. In the last month I have tried to up her feeds as to put a little weight on her. The dr. wanted 1 pound in the next 3 months. First off, since Annabel had her feeding tube placed she seems to not be comfortable with her feeds. She is always ok with being spoon feed her baby food, but not any liquids. Annabel has been tested many times over for reflux. Not just with barium swallows, endoscopes and then a ph probe. Never has she showed signs of GI reflux. But now there is not a doubt in my mind that she has this. Just yesterday after feeding her 4 oz. of Pediasure in her tube if came right up through her mouth. This happened so fast, I was shocked! She is gagging and wretching after each meal. She has been up since 3:30 a.m. She took a very short nap from about 8:15 a.m. until 9 a.m. We have just returned from her therapies and she is still awake. My gut says stop with the tube feeds and just feed her the baby food. But then she has the UTI issues which she needs the liquids to help in that area. I guess I had become too comfortable with each day! I am hoping and praying that things become a little more settled quick. If anyone has experience this since placing the tube, I would welcome any advice.
Annabel will begin school on the 25th. She will be so happy to see her teachers again and I know it will be good to get back to a regular schedule. We will probably lose our wonderful nurse LaToya. I will not be able to provide enough hours in the evenings to keep her. It is so hard for me to justify her going to school all day and then have someone else come in to care for her. I keep thinking where is my mommy time.