Tuesday 25 June 2013

China Waiting Children and PKU

I know, it’s been so quiet on my blog; that’s because nothing is happening right now but just waiting for the home study to be written up. I’m so anxious for it to be submitted.  I did check in with the social worker and she did have to be away for a few days on a personal matter but she said my home study is moving along.  It hope it is.  It almost seems right now like it’s not real, not until I see it and hold it in my hands. In the meantime I’m hoping to at least advocate for some children still waiting for their families.  There are a few girls I’ve noticed with PKU, there are two over the age of 5 and one just had a adoption disruption because she’s more delayed then the family was lead to believe. That is so sad but it is a reality of PKU that if left untreated there will be brain damage; even if the brain was perfect at birth if too much protein reaches it and the child does not get the formula of extra nutrients and vitamins required for proper growth and development she will be delayed, have behavioral issues, IQ will be low. Then there is a two year old who still has a chance if proper gluten free food is fed to her and a special formula added, her blood checked monthly to grow up to her best potential. Children with PKU are usually quite thin but this girl looks well fed so I’m not sure if she’s getting the proper PKU diet. I’m sure every child reacts differently to this condition but special food could be very costly for an orphanage so I don’t see them accommodating that.  Although the look in her eyes tells me she may not be getting the specific low protein diet already, the brain damage or developmental delay may not show for years to come.  So the intervention time for this little one is now.  She is still listed on an advocating website though she may be already adopted and hopefully getting the diet she so needs. Not that I'm an expert on PKU but this is what I've learned so far.



10 comments:

  1. Hi there, I was just reading your blog and so glad you are still on the road to adopting. We are as well. We did a homestudy to adopt through foster care in America, but still need to begin our international homestudy. Hopefully in a week or two we can begin. We are fairly sure we want to pursue an adoption from an African country. Blessings to you!

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    1. Hi, Rhonda, thanks for leaving a comment. I enjoy hearing from others. So have you already adopted domestically? Or are you doing both home studies to leave your options open? It's not easy deciding on a country. We originally started with Russia where I saw a great need but unfortunately their program was completely out of our reach so we did have to switch countries. I also found a great need for adoptive parents in China but I'm sure there are many other countries in the same predicament. Which country were you thinking of?

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  2. My husband and I are the parents to 9 biological children ranging in age from 25 yrs down to 3 yrs, and have just started our quest to looking into adoption. At this point we don't even know if it will be possible because we are that new to it all, but that being said we would like to adopt a child from another country who has PKU (three of our nine children have PKU, so we know what it entails). We are praying this works out, but are so new to everything that I am fearful :o) My biggest fear is the costs involved. I am not afraid of the costs after because financially we can easily add another child or two to our family, but my fears are the adoption fees as they are very high.

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    1. Hi, Michelle, I really didn't think anyone kept up on my blog anymore because it's so well, dead around here, lol but now I know there are at least two readers. Thank you for reading and leaving a comment. We have completed an International home study but we are still pretty well in the beginning stages of all the other paperwork. We did get police clearances and FBI fingerprint clearance, medical papers and financial papers filled out but some of it was done last year so I'm just afraid that they may be too old once I'm finally ready to send to the agency for the dossier. Every step seems to have so much waiting in between that it's really teaching me about patience. I thought I had patience before but now I know that was not so. My hubby is still a reluctant husband but he's been there with me through the home study of which instead of the usual three or four meetings we had nine. For a reluctant husband that's a great accomplishment so perhaps he's less reluctant then he'd like to admit.

      You have a grown family too, we only have three, they are 27, 24 and 21 so no little ones except for one two year old grandson. I wish so badly that I've had my eyes open about the orphan situation sooner so I could start younger but all I can think of is that it was not the right time. For my husband it's still not the right time but for me it absolutely is. I know I was meant to do this, to help a child. The reason I'm talking about PKU is when we were first looking into adopting from Russia, I found a little girl on a Russian charity website who raise funds for medical needs for the orphan, her name was Leah. She was 7 at the time and very precious. I supported her for a year with donations of money for her special diet and clothes and toys and most basic needs. As I learned about the Russian adoption program I found out first you have to deal with regions. Each adoption agency only works in certain regions so if the child you fell in love with is in a region no agency works in/has a license to operate in then you can't adopt that child. Even if there was an agency and they may be able to view a file of a particular child with special needs the child's medical condition has to be designated as special needs by Russian government and PKU is not considered a special need. So there was nothing we could do to adopt Leah unless we were willing to spend a tremendous amount of money for the agency to apply for a license to work in that area. I think the Russian program is one of the most expensive and add to that extra $$ for a one time license, it was impossible for us. Had we won a lottery, I would've done it in a second but no such luck.

      Then I became aware of the need for parents in China, a huge need there and the program seems within reach moneywise. It's hard to put a price on a child's life but you do need to think about how and where you will come up with the money. I also feel even though two of our three kids are still home and we do spend a bit of money on the grandchild there is still room for one more so the afterward is not a great concern. This is another reason why adoption sometimes takes a while, unless you have savings or you get a loan you have to wait to earn the money. We were going to get a loan but feel we have enough loans and will just earn the money as we go. As far as your family size I think there is some cap with China but it depends on how many little ones you have, like no more than five under the age of 6. An agency might be better able to tell you.

      Please, do tell me more about PKU. How does it change your lifestyle? How long do the children continue to have blood check ups? How do you keep their energy up? Would love to hear back.

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  3. What advocating website is this precious gem on? Two of the older PKU girls have been heavy on my heart....I am so sad to hear one of the girls is going through a disruption.

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  4. Yes, it is sad to hear of the disruption but I can't imagine it was easy for this family to leave her behind. There must've been some pretty heavy circumstances that prevented them from adopting this child. The litte girl in the picture is on the Yahoo advocating group site, Advocate for Waiting Children.

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  5. The little girl in the picture is my daughter Lainey. She was treated at New Hope Foster home. She is now home with us in the US.

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  6. I'm so happy to hear that this little one has a family. I hope you were able to get to her quickly and she is doing well with you. If you have a blog, I'd love to visit.

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  7. My wife's blog is http://www.seriouslyblessed.com/

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  8. We are interested in adopting a child with PKU as well. We are very experienced with PKU. We would love to hear of any agency or advocacy sites that might be able to assist us. Thanks for your post.

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