Parenting PKU

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 ...

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...

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

We started a new diet plan on Friday the 16th that was a big deal, it was a big step. We went up to a very high amount of breast milk, high enough that since that Saturday he had only had phenyl-free formula fortified breast milk leading up to the Tuesday following that diet change. We had been adding the phe-free formula to every bottle of breast milk so that Luke gets the extra calories he needs to catch back up on his weight growth.  Well as of Monday the 19th he weighed in at....  9lbs 6oz!!!   *Cue Mommy doing a happy dance in the hospital and praising her big baby* The dietitian was pleased with this weight increase and we just needed to wait to see what his levels are from his Sunday heel poke following that change. The Sunday heel poke would reflect 3 days at the high level of breast milk and when we got those results we would have a good guess as to how high his levels had gone and make a new adjustment. It seems like a great thing that we went al...

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...