K is now over 13 weeks. He is full of smiles and gives wonderful responses to our voices; it is so lovely! Words cannot express how wonderful it feels to see him full of life. Admittedly, we had a very patchy last 13 weeks. Luckily, K's phe levels consistently have been very good, but we had our frustrating and helpless moments which still made us feel like our world has turned upside down. Without going into too much detail; some health professionals were not at all understanding or helpful and left us sickly worried without the basic care that our son needed. I don't want to go into details but all concluded that all of the difficulties we had was due to being cared by a small centre where the understanding of the condition and the support for families are very limited. We asked to be referred to a major centre after our struggles and now feel like we have turned a new clean page. Since we have been referred, our worries have lifted. We can now enjoy our growing son and no more spend time worrying if we are going to get the basic care for him. It pains to think that all this aggravation and worries could have been avoided if we started off in a major PKU centre. All this time we stay connected to NSPKU which has been absolute god send; they were so helpful and always ready to listen our worries which helped us cope.
On the other hand, our look on PKU has changed so much in this short time. At the beginning, we couldn't see ourselves getting over it or living a normal life again. We no longer afraid or intimated by it. We feel very lucky that K has a condition that can be monitored from birth and he is going to grow up healthy and normal as long as we ensure he sticks to his diet and send his blood tests to the lab. We feel have no reason to complain or feel bad for him as there are more serious conditions out there.
We have met other parents with PKU children, their knowledge and relaxed attitude did help us alot as well. I don't know why but seeing other children who has grown up with PKU did reassure me. They were absolutely gorgeous, happy children like we were told by the dietician. Seeing the results with my own eyes reassured me.
The other thing that changed for me, I actually look forward to making and preparing PKU food for K. I love cooking so it makes me pleased to know that I will be making lots of home-made food for our son. I had thought that all his food came pre-packaged from pharmacy but actually there are recipes out there where you can try to make their food look more like a normal diet. We are going to a attend a PKU cooking class in couple of weeks' time which I cannot wait!
We were told yesterday that our son is likely to have a mild PKU. I felt so happy. I don't even know what it means entirely, but I know it is another step in the right direction. I was so excited, I couldn't sleep.
