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.