We just got a letter from the Donor Breast Milk Bank and they are stopping Elizabeth donor breast milk because Lizzy insurance has not been paying . We had no clue they were not paying. Lizzy's insurance had prior approved Lizzy milk so all this time we thought they were paying. What are we going to do? Lizzy has to have that donor breast milk to thrive and survive. I have tried everything I can on Lizzy nothing works better with her tolerex mixture than donor breast milk. She has so many issues with diet because if her disease. Fatty acid metoblism disorder. I am just a mess right now. Tears are flowing down my face. I dont know what to do. This is one thing I can not fix. I have a wonderful lady that is sending a box of her breast milk but I have no clue on how much. Then, when that is gone then what? She is so great to help us but what after its all gone. Lizzy gets 16 ounces of breast milk a day and 20 ounces of breast milk a day when she is sick.
I am just sick.
Paul goes back to work today after his teeth being all pulled. I got the court documents online. The union and his job is ending March 4. No more extentions. We have come to the lasts days.
Lizzy on the other hand is doing great. She is bouncing back. Still not all cleared up yet but ornery as heck and ready to rock and roll. She has been talking about going to Kentucky to see all her friends constantly at CCK. Wonderful place for special need kids.
You ever feel like you have just ran out of all options? Ever feel totally helpless? Every feel like you dont know how you can continue to keep fighting? You ever just get so tired and need a rest and are not able to do that? You know you have to but dont know if you can? Its not like me to give up but..... Lizzy is such a wonderful child and what am I to do this time?
We do believe in miracles and right now we need a few God if you are listening.
www.our-sma-angels.com/elizabeth
3 comments:
Could a family member donate milk to her? I know you are about to have another grandchild soon, maybe she could donate milk for Izzy. I know its alot to ask, especially with her saving the cord for Izzy. That really does suck, to have her food taken away. Im so sorry Jeanna. I remember someone on chat having some contacts with donor moms, did you post this to chat yet? Im thinking of you guys, hang in there. HUGS Sheila
Jeanna, I just don't know what to say. I wish I could help. I know you will hang in there because of Lizzy. We have no choice when we're given these special children. Hopefully in a few years we can look back at these times, shake our heads, and say we hung in there and survived.
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