Parenting PKU

Well today I placed an order for what seems to me is the "next stage" of foods for Lucas. I have been putting off moving Luke to more firm and diverse solid foods until I ordered him up some of the low-pro options that will a big part of his everyday diet. Things like making him bread and putting the "peanut" butter on it, it won't be real peanut butter because 3 tablespoons of creamy peanut butter has his entire days worth of phe!! (crazy right?!?) So how do I order up this food? I go to a special website and it provides me with all their options of mixes, baking needs, soup bases, pastas, rice, cereal, cookies and more. I select what items I need to order (including his formula) and it provides me with a grand total. So far we have been able to order up all free items. These are items that are paid for by the government and I have had a couple people ask me why would it be covered? Well Lucas' food is a medical food  due to the fact that the protein has ...

Yesterday, April 24th, we had Luke's solid appointment at the Stollery Children's Hospital in Edmonton at 8:30 am (early for getting everyone presentable and packed up!). We got to meet the most recent addition to the Metabolic Dietitian team, Sydney, who I have been emailing and chatting with for awhile now but hadn't met in person. She is as much as a sweetheart in person as she sounds on the phone.  We started off by talking about Luke's growth which has been spot on (woo!!) and he is gaining weight at just the right pace. Also he has maintained safe zone levels!!! Good job Lucas!  We found out Lucas' phe tolerance is between 320mg and 360mg.  His current average is 335mg of phe a day. Then we got into the learning aspect of our visit. Basically next time you see me say "count protein" you need to throw something at me because there are varying amounts of phenylalanine ( phe ) in different kinds of proteins. Below is a break down...

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...

It feels so good to say that we have had safe zone phe levels for one week now!!  I got a wonderful call on Monday about Lucas' phe levels being 133 as of Thursday the 22nd and it was so wonderful to hear the dietitian even express how happy she was that we seemed to have hit the diet plan on the right mark. Even better was the call I got yesterday saying that Luke's phe level had gone from 133 to 221!!!  We are so happy to have Luke in the safe range of phe levels and he is gaining weight so well! This is a very happy place for us to be and we did not make any diet changes this week! So all in all I think it is very safe to say we are excited for this and look forward to hopefully being able to keep his levels in this range for awhile.  Luke was happy to hear his phe levels where so great <3

Let me start by saying that, as much as I like to talk and talk openly about anything and everything now, I used to struggle to voice my opinions and questions to medical professionals. I am not sure why, maybe in my earlier years I used to think they are the ones who went to school forever so they must know everything about what I need them to know about. Well I do believe many doctors have a well rounded education, I also now know that we need to voice concerns and it is okay to ask the doctor to explain themselves and/or explain how I am feeling about what is going on.  Well I have been struggling with trusting Luke's metabolic team since before Christmas but had kept pretty quiet about it, thinking that they are the experts and they will let us know what needs to be done.  Since Christmas Eve Luke's phe levels have been well below the "safe" range which is not immediately dangerous but it also not ideal for helping him grow. These low p...

Well our little man is now four weeks old and getting closer to his due date! Almost time for the doctors to stop adjusting him to gestational age - now they will just adjust his age starting from his due date. But we don't care about that! Lucas is 4 weeks old to us!!! The last week Lucas has been going through a growth spurt which has made things a little interesting on the PKU front as it has caused big changes in his Phe levels. When he goes through a growth spurt or when he gets sick he will need higher levels of protein to keep up. This meant we increased his breast milk intake by quite a bit which hopefully will help him put some more weight on. He weighed in at 5lbs 12oz on December 4th and we will have an updated weight on Thursday this week. As people can guess we have decided to bottle feed Lucas due to needing to closely monitor exactly how much breast milk he is getting vs how much formula he needs. He still gets my breast milk,...