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August 2011 Moms
Gilliebear
member
*Ambicklion*
Gilliebear
member
How is Baby K doing? I dont think I have read anything on her lately and I was wondering if her health condition had improved or not? Has Baby momma stepped up to the plate yet or is she still MIA?
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Re: *Ambicklion*
Thanks for thinking about Baby K. It has been an uphill battle and not sure when it will end. We finally have Texas Cooks Children's Hospital on board to take her (well, some of the time they are on board, long story) but the State of California will not help us get her moved. They want to put her in an institution there instead of sending her to family. Her mother has only been there "when needed" to sign papers giving my mother temporary custody. I still have not spoken to neice. We have gone from, " she won't make it two weeks" to "she needs a new trach tube". At times they tell us she needs a medical transport to Texas which is roughly $21,000 then they say Southwest has a deal with them that would allow her to fly free with a small team of people but then they won't help us with that. We can not get Medicaid for her until she is physically in Texas but Texas won't take her until she has Medicaid?? It has been truly incredible how we have gotten the run around and there she sits, alone, no longer in NICU as of 3wks ago. She is in a room where she doesn't get the attention she did as in NICU obviously and she is just wasting away, mentally. They have diagnosed her as having a neuromuscular disease and chronic lung disease with a tracheotomy and gastric feeding tube. Her brain functions seems normal, she is "there", if you know what I mean. She smiles when she sees you, gets excited and knows what is going on. It is so very sad to know she is alone. We are working every day to get her to a hospital in Texas. We are not sure what the future holds for her. My mother has been told that since she has no support in Texas (no family to help) that Baby K will have to be in a hospital setting due to the trach. Even though she can get in home nursing assistance they do not consider that "support". At this point she still refuses to let me take her on. I'm tired of arguing so all I do now is try to find as many resources as possible. Sorry for the long, confusing writing. I'm doing many things at once trying to prep to be gone for two weeks for work. I hope your cute little sweetie is doing great. We need to all hug our babies a little tighter and be so gracious for their health.
Wow reading this just breaks my heart. It is so sad to think that these things actually happen to innocent little babies. I am so sorry that your family is going through this Amb. It is not right. I will be praying for baby K and sending her my thoughts and love. :::Big Hugs to you:::