Growing Boy

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:

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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 completely filled and soaked through to the back. Then mark it with the date & time! 

Sounds so easy when I put it like that, and to be really honest it is getting "easier" in the sense that Lucas doesn't even notice it has happened most times which is great. The ones we did when he was very new were so much harder due to a lot of factors, but practice has made us better at it and more efficient. I still hurt a little every time I have to do it, and when I put his socks on and see a healing cut it hurts a bit again. I know it is completely necessary and helps keep Lucas a safely growing boy, but causing your child pain does not feel natural at all.

Well the big news coming up is we have booked our appointment with the Metabolic Dietitians to learn about introducing solid foods to a child with PKU. This is when I have a feeling things will start to get very interesting. They will be teaching us a lot and to be honest this feels like almost like taking the training wheels off; up until now I have been given exact formula, PKU formula & breast milk amounts that he can have and that is all. I don't have to calculate any phe myself yet. Now I will have to pick and choose what to feed him based on his phe needs for the day.

We will be learning how to calculate phe, protein, and exchanges (?). I add the question mark because like I mentioned I have not yet had to do any of this. I see other people counting one (or sometimes all) of these when they list recipes they eat, but I am not completely enlightened as to how we will be counting Luke's food. 

I do look forward to starting to introduce foods, seeing the looks on his adorable face as he discovers new tastes and textures, and learning his likes and dislikes.

I will not lie and say I don't still worry about the future and what it holds for us and for Luke. I am not trying to "borrow trouble" when I think of the situations we will face, but like to think of it more like I am starting to think of the ways we can make this easier for him to feel like food isn't a big deal. Sleepovers, going to camp, church groups & outings, kids birthday parties and so many other situations will have to be faced and we will need to learn how to cope with adapting to these challenges. 

The counting phe, exchanges, calories and weighing all his food is very doable and really that part does not scare me in the slightest, it is the times when I will not be present or the times when I know he will eat something he isn't supposed to (because that's what kids do!). 

I want to say a big thank you to everyone who reads this blog and follows our adventures. Please please leave a comment if you want, I really do enjoy even just a hello saying you stopped by. Sending love and best wishes to you!!