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!!
Labels:

Comments

  1. Mr. Davis28 December 2014 at 01:13

    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

Introduction

Hello & thank you for taking the time to find and start reading this blog about our journey as we discover what parenting an infant with PKU means for us. Now most people who we talk to (including a fair amount of medical professionals) have no idea what PKU is or what it means to have this condition.  So let's start by trying to explain PKU to those who don't know what this condition is (just like Jeff and I the day the doctor told us that Lucas had it). The following is information provided by  http://www.canpku.org/  which is the Canadian PKU site. PKU is short for phenylketonuria (pronounced fen'-il-kee'-to-nu'-ria) PKU is a rare, inherited metabolic disease that results in mental retardation and other neurological problems when treatment is not started within the first few weeks of life. (Lucas' condition was caught within the first days of his life and treatment was started the same day) People with PKU are missing an enzyme to brea...
3 comments
Read more

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...
1 comment
Read more

Reality Check

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.
2 comments
Read more