Parenting PKU

As another "food centered" holiday approaches I can already feel my mind racing. Trying to think of ways to make Luke feel like he has choices at dinners and that he can feel included in all the Easter goodies. Chocolate is high phe, so I will be going to Micheals this weekend to get some chocolate molds to fill with his low-phe chocolate, I will bring some to dinners and some will be for his Easter basket. I am also going to try my hand at his special buns - he is a carbohydrate lover like his Mommy so I know that I will likely have success having him eat those.  I don't want to make it sound like we don't have marvelous families because we do! Our families understand, they always help us include Luke friendly foods and want to make the holidays special for him. We are truly blessed to both have supportive parents and siblings AND extended family who love to shower Luke with love & fun!  Luke is not trusting when it comes to food, this makes him VERY reluct...

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...

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...

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...