While I know that we are taking on some major hurdles with this child, it did make me think harder about the issues. Particularly, I am thinking more about how to handle his other genetic disorder, GCPS, otherwise known as Greig's Syndrome. This is a very rare disorder, much more so than PKU. Understanding Greig's is still in the beginning stages as well. I joined a support group on Facebook with families living with Greig's and learned that most have delays and require occupation, physical and speech therapy. Many of these children didn't start talking until 3-4 years old and have very limited vocabularies. While I feel that Paulius's GCPS is not severe, we have to be prepared for the unexpected challenges associated with Greig's and the typical delays associated with adopted children. Not to mention he still has to learn English and when he gets here, we will likely only have a year and a half to prepare him for kindergarten. So for the past couple of days, I have been just trying to wrap my head around all the possibilities.
Paulius had what I believe is an annual assessment on Tuesday. I am anxiously awaiting the results. They will share them with me once they are available. I have seen his previous assessment, which is probably from last year, so I am curious to see if he has improved since coming into the orphanage and receiving treatment for his issues, including PKU. While I do worry about what GCPS will present us with. His delays have been associated with PKU, and he is at a great age for overcoming his delays once we get him here and on the best diet possible. However, if we get him hear and learn that the delays are associated with Greig's, then overcoming them will no be so simple as adjusting his diet. If you want to see other children living with Greig's, check out the group on Facebook called "Greig's Syndrome GCPS Support". It was reassuring to me to see these children and learn how well they are all doing despite their struggles. So I though PKU would be the rarest thing our family would ever know, and now GCPS is much, much more rare and is a dominant trait, whereas PKU is recessive. Some people think we are crazy and others think we are saints! I know I'm not a saint, but if anyone can handle this, Bryon and I can!