Parenting PKU

Well as mentioned in past posts we had a big appointment with Luke's whole team on Wednesday and it has taken me a bit to write about it, mostly because I am still trying to work through it in my own mind. It was by far the longest appointment we have had - even longer then the original introduction. We talked with Melissa, Luke's main dietitian first for about 45 minutes and she took all Luke's measurements and plotted him on the charts. We have Luke up to the 25th precentile for weight, which is good news, he is the 50th precentile for height and when you plot his length and height combined he is 25th precentile (therefore long and skinny - sound familiar Matt?). They are pleased with his growth and don't believe there will be any problems from when his levels were low for so long. Then came talking about his current intake of protien and phe. This is where I tend to get emotional because even though I know that this is a lifelong disorder, I think I am like many who

Fourteen days of safe zone levels for Lucas! What a fantastic feeling &  along with the great feeling of safe zone levels we also have the great news that we still have  no diet changes in over  2 weeks ! I am very relieved that we appear to have found a good place with Lucas' diet, it means he is getting all the protein he needs; whole protein from breast milk and the Similac formula and also the phe free protein from his PKU formula. We have a "big" appointment with his Metabolic team of doctors and dietitians on Wednesday next week and there is talk of us learning about his current tolerance, which I look forward to hearing and sharing! I have to admit that the day leading up to a phone call from the dietitians I tend to start feeling anxious, wondering if his levels have changed despite no changes in diet and just a general worry. This makes me remember what fellow PKU parents have told me; "don't let the numbers control you". I have also had p

I want to take some time to say thank you and shine some light on something very important - you. Now I don't think I could ever be able to clearly and completely get people to understand how much it means to me to have so much emotional support. It has been incredibly amazing the love that has been shown to Lucas, Jeff and I as we have started this adventure that is our new life.  By talking to friends, family, friends of friends, family of friends, friends of family and so on and so forth, I have discovered so many people that are willing to listen, to share their stories or struggles and to lend support in any way - big or small. It has nothing to do with a grand gesture, it honestly could be a simple like on a Facebook post or a comment about this blog. It is, to me, a show of support. Thank you. Thank you for reading about Luke's PKU and to those who have offered support as I get my feet under me in this amazing thing called Motherhood. I cannot express how much it