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...

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...

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 Lucas is 6 lbs 8 oz today which is great! Little man has come so far in growing which is great because with his levels being so low there was a chance he wouldn't gain. We have increased his breast milk again and we will likely have these results Monday to see how high his levels have climbed - we hope this is the perfect amount but there is a chance it might be a little too much. Lucas smiles more and more everyday and really reacts to Jeff and my voice. He can now sit in the swing and it is hard to tell if he enjoys it or if it annoys him, he makes lots of noises - squeaks and little cry/whimper noises. He is also starting to react to people who he sees often like Grandma and Grandpa. We have a camping trip planned for August for a family reunion and it is amazing how I am already thinking ahead and wondering where we will be with his levels and what he will be eating. But those are worries for another day, today I am just going to bask in his baby smell ♡

Lucas went through a growth spurt a week ago and we have learned that this would actually greatly effect his levels. When we met the dietitian she mentioned that things like illness & growth spurts would lead to fluctuations in his phe levels and this was proven true. He went from right in the normal range down to the lower levels of where we would want him to go. Now it isn't life threatening dangerous to dip down in levels but in order for Lucas to continue to grow we had to get the levels back up which was done by adding more breast milk to his diet. This was nice as we were able to leave the breast milk levels high so far and as of Thursday last week we were back in the good range for his phe. Now today, Tuesday, we are back way down. Sigh. It's a bit like a roller-coaster.  Now all we wait for is the green light from Melissa the dietitian to go down to only testing his levels once a week which would mean only one heel poke a week but this will have to...

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,...

The Monday after Jeff and I found out that Lucas had PKU we went into the Stollery Hospital in Edmonton to meet with Melissa and the rest of Lucas' team of doctors. Lucas has 2 metabolic genetics doctors, 2 dietitians (including Melissa) and a few resident doctors.  First they sat us down and did an in depth family tree for both of us and asked us many questions about family and siblings. We learned that there was a chance that all of our siblings would be carriers of the PKU allele but the chance of them meeting another PKU carrier (and therefore deciding to have kids) is 1 in 2,500. At the moment there is no way to screen for a recessive PKU allele so there is no way to know in advance if someone has the recessive allele.  We got a lot more information on what PKU is (see  here  if you didn't read the introduction), how it will effect Lucas' diet in his long term future and what it means for the immediate future. We discussed the formula that Lucas will be on a...

When Lucas was born he was premature by 5 weeks, meaning he was in the NICU at the hospital overcoming some "preemie" challenges when my husband and I found out about his PKU. I had just been discharged that day, Saturday Nov.15/14, and was trying to come to terms with the fact that I would be going home that night without my baby. As many can imagine I was a mess and not at all impressed that I could not stay. After we had held Lucas and said our goodbyes a nurse came up to us and said a nurse practitioner and dietitian needed to speak with us.  I looked at Jeff and we both knew what this meant. Wednesday that week a doctor came to me and mentioned that some levels of Lucas' heel poke test came back irregular and that not to worry they would run it again. I asked which levels and then quickly googled what it was... then shut my phone and said "nope, that can't happen to us" In that moment however, as the nurse lead us to a private room, Jeff and I...