Well the summer is over, school is back in and even though M is not school age , I opened my in home licensed family daycare when school started. We currently have 5 kids registered and most of them are before and after school care students. Our days are filled with arts and crafts , out door play and getting back into routine.
We went down to Victoria for the Labour day long weekend. To visit my family and I really noticed how badly i was suffering from high levels and anxiety. I really let myself go over the summer. Eating a lot of rice, not eating any low protein foods, not counting or measuring . I got so out of control I was forgetting so much. I was forgetting to take my medications and even if i had drank all my formula. Most days i was not getting my formula in. I felt myself drowning. I knew I had been spiraling for a while but just didn’t have the motivation to stop myself. I couldn’t think clearly. I did not realize how badly it was impairing me. I couldn’t even problem solve or think clearly. I remember I wouldn’t be able to finish thoughts or think of foods to eat, meal ideas. I was lost.
I made it my goal as soon as we got back from our trip to buckle down and rein it in. Now that we are half way though the month we are working out a routine, getting onto a schedule and i am making progress.
We wake up at 7 am. Kids start arriving at 730 am. I make Madelyn’s breakfast and clean up from the night before , or the kids and I all do cosmic kids yoga. at 815 we walk the kids across the street to school and we come back and I make and eat my breakfast. Then Madelyn and I have our time together. I make her lunch at 1130 and she naps at noon till 2 15 pm. I eat while she naps. At 230 pm we pick the kids back up. we stay outside for 30 mins, come back for afternoon snacks. I have been starting to eat a snack to. I found that i was skipping lunch a lot and we dont eat dinner till 630/ 7 pm so im going all day or from noon till 6 or 7 before eating again. Also by having an afternoon snack it reminds me to get that extra formula in.
After snack we go down to the playroom for arts and crafts and free play. The kids go home and we close at 5 pm. I come up stairs and do paper work and sit down for a bit then start dinner.
Madelyn goes to bed between 8pm and 830 pm.
Having a schedule has really helped plan my day , meals and activities around. I have been doing pretty good at eating only low protein foods for breakfast and lunch but i still struggle with dinner and end up having rice a few times a week but no longer every single day. When I say i am eating rice, i mean like 2 cups dry of white minute rice. So very very high in PHE so please dont do it. If you never eaten it dont start and if you are please stop. It is my Achilles heel. My biggest weakness when it comes to food. essentially i am addicted.
It has been about 2 weeks since i started to eat better and now im adding back more fruits and veggies . I am really feeling a difference . A few weeks ago i was stuck on what to eat, what to make, different meals and found myself eating the same thing time after time. Now im like hey wait a minute! There are alot of options. I can list off a few new meal ideas or plans. I have been writing myself notes, and lists. My time management is improving. Ive gotten out few times and am starting to plan ahead . I got myself an agenda and a note pad and set it all up with reminders and important dates etc. I have set myself up a financial budget so i’m making goals and working towards them. I have more energy and am contemplating adding a yoga routine into my day.
Now if only I could get some sleep id feel like a new person!
The fog is lifting and i am finding myself encouraged. I have made some new low protein foods orders and updated my formula prescription. Over the summer I added the Orange and berry periflex Lq to my formula regime. but i struggled with it as i needed alot more and it was one of them i was forgetting. I was suppose to have 3 a day plus 2 bettermilk. Before I was having 2 bettermilk in the am and 2 in the afternoon. So now I was having so much extra. I think i might change it back. I enjoy the taste of the bettermilk better. Ijust liked the convenience of the juice boxes and being able to through them in the diaper bag when we were on the go or at the park and traveling. I have to pack so much with me when i am just drinking bettermik. I need the packages, water, mio for flavoring and a straw. Plus a shaker bottle! It really adds up and takes up alot of room. I wish i could like the ready made bettermilk in the juice boxes but i just do not. I like my method for mixing it so much better. Now that my daycare is open and we are back to school routine im not going out as much so i might just switch back.
I plan on following up with my dietitians next week when i do another blood dot. my last one was august 1st and it was 10 mg/dl I expect that it was alot higher through out the rest of the month. I really feel my best at 8 mg/dl and under. I hope I can get their again.
I would love to hear from you on your favorite meal ideas. If you feel like sharing with me please pm me on fb or email me!
thanks for reading
Amanda
Photos from Left to right :
1: Today’s lunch. Cambrooke foods low protein homestyle bread, earth island vegan cheddar cheese grilled cheese sandwich, carrots and celery with ranch dressing.
2: my family and I picked all our pears from our pair tree last weekend. It was our best year yet for pears. I finally canned what we had left yesterday and ended up with 12 pints of pears and one jar of spiced apple pear sauce
3: Today’s afternoon snack. Granny smith apple and a cambrooke foods pumpkin raisin cookie and my formula.
Discover more from I am PKU Strong
Subscribe to get the latest posts sent to your email.

This is just food for thought as I can relate to how you have been feeling even though my phe levels have been perfect all summer long…I am pregnant. Seriously some levels have even been too low! I thought I was suffering from hypoclycemia due to gestational diabetes. I kept thinking my phe levels were too high, and ended up finding they were either right on track or too low…so what I eventually realized is that in my efforts to not gain too much weight, I have been restricting my overall calorie/carbohydrate intake to the point that I cannot think clearly and lack motivation for simple things in my life. So I would recommend that you really not be afraid to eat enough. Get as much healthy food as you can balance, but not getting enough calories and nutrition also effects how you think. So combining that with high phe makes it even worse. Hope you are feeling more on top of things and good for you for getting back on track!
LikeLike
I am getting well over 2500 calories a day. I eat like 2 cups dry of minute rice at dinner. I add mircle whip to pasta, i eat syrup on the low pro pancakes and waffles. I am suppose to get getting under 1800 calories but they lower my calories the hungrier I am
LikeLike