Skip to main content

Growing Boy

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!!

Comments

  1. Best of luck to you & your family. My wife & I have had a bunch of highs & lows through out our 4 year journey (and counting) with our daughter. Keep thinking positive thoughts our daughter has adjusted to life & as she contours to grow & get older the more we can explain to her about PKU. We were also having to test her every week for about 10 months then her level would spike because she got a cold then we went back to testing her twice a week. Then as time progressed (based on her levels) we were allowed to test her once a week, once a month, once every two, three months, every six months. Now since our daughter has been doing so well we are allowed to test her once a year!! This took until she was almost 4 years old!
    My advice would be to stay patient, celebrate the low levels however things can change in a hurry. Also it got a little easier to handle as our daughter got older.
    Best of luck! I don't know if you pray or not my wife & I have ( a lot more) since our daughter was born. If you need help just ask.
    Take care!!

    ReplyDelete

Post a Comment

Popular posts from this blog

Toughest Kid Around

Today was such a busy but great day for the three of us. Luke, Jeff and I headed to the Stollery at 9am to meet with his metabolic team.  The appointment  The dietitians always start things off with weighing and measuring Luke to see how well he is growing and if you have been following the blog you may know Luke has kinda been a bit light on the scale. However today we were happy to find out he is doing really well both height and weight wise! He is in the 50th percentile for both!! Then we talked about his diet some, touched on his formula intake and got the green light to try him with a new juice type formula (which will be good for summer holidays) Then in came Dr. S, she is his pediatrician/metabolic doctor. I love this lady! She is great at offering guidance and suggestions that will make things easier for us as he gets older, things like having him help us make his formula, help us weigh and measure his foods, those sorts of things. The exci...

Food Centered Holidays & 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...

Quick Facts

Hey all!! First a small update on Lucas: we still do not have his phe levels balanced out but we are working hard with the dietitians to get past this current growth spurt! I have a feeling, call it Mommy instinct, that his next levels we get back on Tuesday will look much better. But I wanted to drop some quick facts about PKU that people have asked me recently. I love when people ask me about Lucas' current levels and ask me PKU questions so don't be embarrassed or worried about asking me anything about it!!! Luke will never out grow his PKU We may decide to try one of the current drug options in a few years to improve how much food he can eat but it is not something that is cured (yet......) Everything Luke eats and drinks  must be recorded and counted in a daily diary Some foods are very low phe naturally (apples, grapes, pears, and more) so he can eat a lot more of them then some foods that are higher (potatoes, peas, cereals) and some proce...