Lizzy is getting better every day. She has been in her power chair the last few days and doing great. Almost over this last illness.
Me on the other hand has had several melt-downs from all that has been going on. Its just never ends all the brick walls and denials for Lizzy. With our other situations going on I am just worn out. Emotionally drained at times.
I even put a post on Craig's list to see if someone would donate their breast milk to Lizzy. I am going to cut her back on the breast milk but.... its not as easy as it sounds. I have her diet perfect for her and it took many years to get here. Adding things is very difficult because she is so sensitive to food and changes in general. I think I will try adding unflavored Pedialite to her every day mixture with some other baby foods. I use it when Lizzy is sick with Tolerex and breast milk. I have been using Pedilite in Lizzy's formula mixture before she was diagnosed. She would not eat it so we had to add orange pedilite in her baby formula to get her to eat it.
I emailed the La Leche League in our area besides surrounding area and NO replies. I had Christen call and talk to an area Le Leche and because of Liability issues they are afraid to help us. Maybe Christen can induce her own milk and quit some of her bad eating habits but the doc said it would be very hard for her to do that if she can at all. I just know this denial really hit me hard.
Today I picked myself up, brushed myself off and will continue to keep fighting for Lizzy as hard as I can.
My plea for help!!
A special needs child with Spinal Muscular Atrophy has an metabolism disorder and needs Donor breast milk to remain healthy. She is no longer able to get from it from donor breast milk bank due to insurance denial. She has a fatty acid metabolism disorder and needs breast milk so badly.
Moms if you are healthy and have some extra to spare please help us. Help us save her life by helping donate your precious gift of your extra breast milk. If its been in the deep freeze its good for a year. If its been in your regular freezer its 6 months. Please read about her in her web-site. She is truly a miracle child. Please help us help her!!
www.our-sma-angels.com/elizabeth
We believe in miracles!!
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