Parenting PKU

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...

I spoke with Melissa the dietitian today and despite a large  increase we did about a week ago (which we were all sure would send his levels higher) Lucas`phe levels did not do the big jump we expected. He stayed on the lower end of the safe levels. This has to be because of another growth spurt which Jeff and I agree explains the 2.5 hour feeding schedule.  This is wonderful news and we were able to increase his breast milk intake again! ** I am doing the happy dance as I type this ** To give you an idea of what it means to increase his breast milk intake here is an example of a day of bottles: On average Lucas has 8 bottles a day so that would mean, for example, of these 8 bottles on Saturday four were breast milk (400ml) and four were the PKU formula (330ml). So he is, on average, taking more breast milk then formula :) We hope this trend continues!! Wishing everyone a very very Merry Christmas & A Happy New Year!!

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...

While visiting a doctor's office for a standard procedure for Lucas I had panicked moment when they went to give him Infant Tylenol. I realized I had no clue what medications he would be allowed, only that there was many he would not be able to have due to ingredients that would effect his phe levels. We stopped them from giving it to him and I placed a call into his dietitian to inquire. The Tylenol is fine, as it has no aspartame.  This served as a strong reality check for me that this is something that will happen in his life and I will have to find ways to adapt and make decisions based on the knowledge I have of his condition. This is where again I am thankful for our health care system where I am able to call his clinic and they can help us out.