Parenting PKU

Things I have learned as a PKU Mom  ( and as a Mom in gereral ) Never let your supply of formula run out (dry or the stuff you have pre-made) order and make LOTS! Lancets (the things we use to do the heel poke) are expensive but it's worth it to have the right one! Do not cheap out on a shaker bottle for making formula, it will leak or explode and that is  so not okay Plan ahead as much as possible - it makes life easier But plan for things to change People are amazing at offering love and support, ask for help when you need it but make sure to pay it back when you can There are people you can talk to somewhere in the world going though almost the exact same thing you are, sometimes it is nice to talk to someone who knows exactly what you are dealing with Don't hide or feel embarrassed about having to ask for different food choices but also try not to let it take over your enjoyment of what is offered It hurts some days to think this is a life long...

Well as most know we have been trying more and more of Luke's low-protein foods, I had blogged about him trying some of his little pasta circles  here . Well they have gone over really well, as has the low protein version of rice! Luke really enjoys it if I mix the rice with coconut yogurt (plain) and a bit of cinnamon, almost like a little guys rice pudding!  We tried the Eggz next and it was a bit more of an adventure then the pasta! Eggz powder comes in a bag and has simple instructions - add "non-dairy creamer" and let sit, then cook one side and flip. So easy.... yeah not so much. Okay the first one was a flop. I thought it would be more like normal eggs and be soft enough for him to nibble on, instead it was much to firm on the outside and not what I would consider safe for a little. So I decided to scramble them up like normal eggs, which of course they didn't do the way I am used to but this time I had softer pieces for him to try a...

We had been blessed with some very stable safe numbers for Lucas for a nice while, it was glorious and I actually did not mind hearing from the dietitians on a weekly basis. However Luke had a sharp dip in his levels at the end of May. So we upped his phe intake and waited for the response to that hike. Well it wasn't enough so we increased again and waited. Bingo. Got the number! Nope, the next spot came back higher then expected so we dropped his intake and waited to see the response. Nope now his level was too low again (not the normal response) so we kind of scratched our chins but made a new change and waited again. Nope, still too low! What the heck is this baby doing to us?!? The problem is how "far behind" we are once we get his levels, anywhere from 3-6 days behind to be honest (Canada Day added an extra day of course). We do a heel cut, take the sample, send it in...then wait.  I actually have not the foggiest idea what this next blood spot level ...

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...

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...

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...

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 ♡