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!!
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!!
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!
ReplyDeleteMy 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!!