Parenting PKU

Today was such a busy but great day for the three of us. Luke, Jeff and I headed to the Stollery at 9am to meet with his metabolic team.  The appointment  The dietitians always start things off with weighing and measuring Luke to see how well he is growing and if you have been following the blog you may know Luke has kinda been a bit light on the scale. However today we were happy to find out he is doing really well both height and weight wise! He is in the 50th percentile for both!! Then we talked about his diet some, touched on his formula intake and got the green light to try him with a new juice type formula (which will be good for summer holidays) Then in came Dr. S, she is his pediatrician/metabolic doctor. I love this lady! She is great at offering guidance and suggestions that will make things easier for us as he gets older, things like having him help us make his formula, help us weigh and measure his foods, those sorts of things. The exci...

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 ...

Luke at 3 months old Well it has been a long while since my last blog post and that is partly due to the fact that things with Luke's PKU have been pretty "quiet" the last while. We were exceedingly happy to go down from 2 heel pokes to only 1 heel poke a week. This is especially nice for me because we chose Sunday as the day to do them, and this is a day Jeff is home to assist. Luke is so tough he rarely cries now! These are some photos I found online (no this is not Luke) which shows what the heel poke looks like: 1>                  2> 3> First we have to warm his foot in a warm face cloth, then we swab the heel with an alcohol wipe, then Jeff starts making silly noises & faces and I use a lancet (like the ones pictured in #2) to "poke" his heel which makes an incision like in photo #1. I then put the drops of blood onto 2 of the circles on his blood spot card (like photo #3) until they are ...

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...

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,...