Our son's journey on Kuvan Trial so far
PKU Practical
Preparation for Easter – PKU style
We always find Easter a bit difficult when deciding what to do for our son with PKU. We always prepare an easter egg hunt for both our children and try to get some treats that they both like. Keir doesn't like chocolate in any form (phew) and there isn't a great deal of choice for … Continue reading Preparation for Easter – PKU style
Christmas with PKU
Kids are counting down the days for Christmas and so excited, I think they are going to pop! I will be prepping the PKU Food for Keir this week. My husband is in charge of the Turkey and the veg. I made a quick Bake and Make List today for Keir's Chrismas Food. Bake some PKU … Continue reading Christmas with PKU
DIY School Bag
I had mentioned in one of my previous posts that Keir chose a fabric for me to make him a rucksack. I have finished it!
Talking to School about PKU
As Keir will be starting school in September, we have started conversations with his new school. Naturally, we are very nervous about management of his diet at school as he is very young and will need lots of help. The SEN co-coordinator of the school has arranged a meeting between us and the school chef. … Continue reading Talking to School about PKU
PKU and Camping at a Music Festival
We went to a music festival this weekend. Keir really enjoyed staying up pretty late to listen to the music. His preference is very clearly rock music! To make life as simple as possible we took food for him and had in our mind some substitutions if they were available from any of the food … Continue reading PKU and Camping at a Music Festival
PKU Meal Ideas for Schools, Restaurants, Family…
Although we have to heavily rely on the specialised low protein food to give Keir a well balanced diet, he can also enjoy some of the everyday foods freely. What I mean by everyday food is that the food you can purchase from supermarkets unlike low protein products which have to ordered through a prescription. When … Continue reading PKU Meal Ideas for Schools, Restaurants, Family…
Sewing – Electronic Scale Cover
I've been wanting to make a cover for Keir's electronic scale for a while. Like all PKU mums, I carry a electronic scale in my handbag all the time for weighing out Keir's food on the go. I felt it needed a cover to protect it from dirt getting into tiny grooves around the buttons any … Continue reading Sewing – Electronic Scale Cover
PKU Blood Tests
Today I thought I would organise a box of things we need for taking Keir's weekly blood test . It has been stored in an old shoe box which has started to fall apart. We used to take blood from Keir once every other day and then when he was around 6 months old we have … Continue reading PKU Blood Tests
Hospital Visit
Today, we took Ella to hospital in Oxford. It was a very long wait but they both were so good. We stopped at Pret A Manger for a quick lunch before bringing Ella back to school. Keir picked dried mangoes and ready salted crisps for his lunch. They were gone in minutes..
pkuandmyfamily.com 