‪#‎pkuphotoaday‬ ‪#‎pku‬ ‪#‎phenylketonuria‬ ‪#‎pkuawarenessmonth‬
May 23 /day 23
Pku ink
*photo not mine

‪#‎pkuphotoaday‬ ‪#‎pku‬ ‪#‎phenylketonuria‬ ‪#‎pkuawarenessmonth‬ May 22 / day 22 New treatments All of my life I have drank a special medical formula . It is full of amino acids nutrients vitamins and minerals . As well as protein with out phenylalanine .

Formula has come such a long way in my lifetime . When i was young my formula was made from potaote starch . It was very chalky and tastes awful . I remember my mom counting it out by scoops into the blender . It had to be pre made each night. And we flavored it with strawberry quick. It had to be stored and drank cold. I used a straw since it was so thick . It separated quickly too. Now a days we have soo many new formulas that are much more advance . For the past few years I have been drinking better milk . It is by far the best formula I have ever had . It has a creamy texture with no after taste and it is made with a whey protein and glyticin. It’s really good for digestion and helps keep me full. I flavor my bettermilk with mio!

‪#‎pkuawareness‬ ‪#‎pkuphotoaday‬ ‪#‎pku‬ ‪#‎phenylketonuria‬

May 21/ day 21
Fries
*not my photo.

#pkuawareness #pkuphotoaday #pku
#phenylketonuria
May 20 say 20
PKU braclets

Canadian PKU and allied disorders inc is the only non profit of volunteers here in Canada . first organized in 2008and is based in Toronto Ontario.

CanPKU is very active in the community and works hard with advocacy campaigns . they have worked hard to lobby for treatment and coverage for treatments.

Canpku has a team of advocates who all have PKU in their lives. Either a child grandparent or patient like myself .

CanPKU works for you in each province.

We host annual events and educational seminars and socials. They have a big impact on bringing the community together.

To show your support or to make a donation please visit http://www.canpku.org

We also sell cool PKU Swag like this bracelet!

‪#‎pkuawareness‬ ‪#‎pkuphotoaday‬ ‪#‎pku‬ ‪#‎phenylketonuria‬
May 19 day 19
PKU clinic

Every 6 months or annually I am required to travel to Vancouver to attend clinic at the adult metabolic diseases clinic . I am seen by their nurse and my dietitian. We go over my blood tests and questions I might have . to discuss treatment what is working and what is not. I also get a chance to try any new products.

‪#‎pkuphotoaday‬ ‪#‎pkuawareness‬ ‪#‎pku‬ ‪#‎phenylketonuria‬
May 18 day 18
PKU formula selfie
I drink my formula better milk 4 times a day. 1 package and 8 oz of water then flavour with mio and shake in my sports cup for each meal and before bed. I love this formula. It tastes great and keeps me full. It is the first formula that is made with gmp whey protein. It is suppose to be the closest in texture to real milk. So it is creamier than other formulas and has an after taste. It is not gritty . it does not make me gag and has all the nutrition and supplements I need.

‪#‎pkuphotoaday‬ ‪#‎pkuawareness‬ ‪#‎pku‬ ‪#‎phenylketonuria‬
May 17 / day 17
PKU awareness on a sticky note :
Phenylketonuria is inherited in an autosomal fashion 2 PKU carrier parents are required to have a baby with PKU .
If both parents are carriers there is a 25% chance any child they have will be born with PKU. A 50 % chance the baby would be carrier and a 25% chance they will be neither a Carrie or be born with PKU.

‪#‎pkuphotoaday‬ ‪#‎pku‬ ‪#‎pkuawareness‬ ‪#‎phenylketonuria‬ may 16 day 16
PKU grocery basket
This is late as we have been away. But it works out as we went for groceries last night.
I am often asked what I can eat..most of my food are medical and are ordered from warehouses in bulk and shipped into Vancouver then to me.
Regular foods I eat that come from a store are mostly fruit and vegetables.
Last night we did a a small shop for things I will need to make my meals today till Friday. I am also planning on making banana bread that is what the cake flour is for and apple cider vinegar.
I use avocados in my pasta even though they are higher in protein . I have to account for them in my day.
Everything I eat is weighed on a scale or measured in cups . everything has protein in it and I need to keep track of how many grams of protein I can eat daily.
A typical day for me is cereal and coconut milk for breakfast with a formula. This week my cereal of choice is captain crunch.
Lunch will be a slice of banana bread and a salad or fresh vegetables and another formula.
Dinner will be low protein pasta with avocado and 2 more formula.

#pkuphotoaday #pkuawareness #raredisease #pku #phenylketonuria
May 15/ day 15
Bandaids
I had a hard time thinking about what to write for this one as I don’t really use Bandaids and they don’t have any real impact on my pku life ..then  I remember that Evey 6 months or annually I have my amino acid blood draw . It’s a blood panel done at a hospital lab. This tests all the amino acids in my blood and vitamins minerals and a full blood panel. This is necessary to not only monitor the protein and phenylalanine in my blood but to ensure that my diet is adequate for my body and I’m getting enough of what I need . Or to make sure it’s not to much or to little. In recent years I have had higher triglycerides and unreadable low iron . So by having this blood draw and checking these levels tells my dieticians when to increase or decrease my formula or if I need to add vitamins to my diet . I am suppose to be taking iron , calcium and a multi vitamin but I never remeber to.

This blood draw is done after 10 hours of fasting so I try to go straight away after waking. This test is very hard on my body as fasting effects my levels and makes me feel like I will pass out  they also take roughly 9 to 10 vials of blood. I always make sure to take food with me and my formula.  I ask the lab to use a butterfly needle so it’s alesier on my arm. I can only get blood from my left arm and after a life time of blood tests I have alot of scar tissue and a perment whole over my vein.

This is the only real time I use Bandaids . I am allergic to the medical tape.  I only use the bandaid Untill my blood has clotted and can be removed. With my iron as low as it is. .the last time I had my blood test done my arm gushed afterword snd went all over the chair and floor. Highly usual . My next amino acid blood draw is October 2015

‪#‎pkuphotoaday‬ ‪#‎pkuawareness‬ ‪#‎raredisease‬ ‪#‎pku‬ ‪#‎phenylketonuria‬
May 14 / day 14
Diet records
The only treatment for pku is a life long diet for life . The low protein diet is monitored by our medical team of doctors and dietitians. We have a numerical value of protein that is our daily intake. Each day we must measure and weigh our food. We keep food records to track our intake , protein , nutrition . This helps us to monitor how much phe is in our blood. My daily goals are to be around 70 grams of protein ( 60 comes from my special medical formula ) and under 1700 calories unless I am active. Increased activity means I can tolerate a little bit more. My focus in previous years has been on keeping my protein as low as possible . The less protein I eat the higher the calories are in low protein food. I was close to 2000 calories or more day. Since February I have been focusing on losing weight and being active for at least an hour everyday. I am paying closer to my calories than ever before and trying to find a healthy balance between my sugary low protein foods and my calories. It is a real challenge for me. Here is what my day looks like today. I have not been active yet today so I will be adding my work out later ! This is only a snap of my breakfast and lunch. it was to small to include my dinner. so the calories and nutritional information is a full days worth.