another blog post tonight. As I am sitting here reflecting on my day with Jellybean and thinking about coles family. I was just thinking about what a wonderful family cole has.  They have always treated me so wonderfully.  alot of people ask me how I told coles family about my PKU or how I told cole but it was not hard. I was just honest. And right from the beginning they never made me feel different or left out. Next to cole, his mom and sister in law are the best.  Very early on Cole taught him self everything he could about PKU. He encouraged me be healthy and to get back on diet , he bought my foods and taought me how to bake and to cook new recipies. Cole comes to all my clinics with me, he tried my formulas and samples of new foods. He asks questions, he volunteers at CanPKU events with me, As well cole is always supporting me and encouraging me . I have fallen off track many times and had several break downs through the years and he has always been there to help pull me out. I can think of many times hes come home to find me crying on the floor sick from side effects and he would just hold me and we would talk and make a plan to get back on track. I love him more and more for it. I was so sick before I met cole and he inspired me to be healthy and gave me dreams and goals.

Cole told his family about my “allergies” and we taught them together. They embraced it right away and never made me feel weird or bad. I was so shy at first from being bullied and ridiculed,  but his family changed that for me.

Coles mom is always thinking of me and what I can eat. At every family meals or get together’s,  she makes sure there is something I can eat. It really makes me feel special. specially since a lot  of my own family does not know what i can and cannot eat. Coles mom is always asking me about my foods and my formulas and what baking mixes I can use. She has helped me learn more about foods and eat more organic and healthy. this summer she taught me how to peel and store beets. We also did some canning and she makes me home made spaghetti sauce from her garden.  She also gives me lots of fresh veggies from her garden. all last summer we didn’t have to buy any vegetables and we are still using her garden grown potatoes. She has a store room of spaghetti squash ,carrots , onions and potatoes.  I just love the way everything tastes from her garden. Specially her lettuce and corn. They are so sweet.  

Its not just his mom who cares about my pku. his sister in law does to. when we go over there for dinner or out for dinner they always ask me first what I can have and what I cant have and let me know if i need to bring anything. 

Coles grandparents are great to! Every Christmas dinner and family meals they make sure there is plenty I can eat. His hole family knows about my pku. I didn’t grow up with lots of family around. I still remember the first time I went to the ranch.. I was in so in awe of how much love there was. It was so amazing for me to see all his family together. Aunts, uncles, cousins, grandparents, and all extended family. I just love the big family get together’s. I feel like I am apart of something. I told cole that that was the way family was suppose to be. everyone getting along and showing each other how much they care. Laughing together and spending time. That’s the type of family I want to raise my future kids around. I fell in love with cole because of the type of person he is , his morals , his values and his ethics. I see now how much of that came from his family. 

I really enjoying being in the kitchen with his family. I use to be very self conscious and I have never really had the chance to cook for cole’s family and for the longest time cole’s dad didn’t even no i could cook. But I do cook alot. I cook dinner for cole and i almost every night, I bake and I cook on a daily basis. Sometimes 2 different meals . In Victoria we had our friends over for couples nights and I hosted and cooked big dinners. I am pretty good at cooking a turkey to and my dad loves my apple stuffing.  I did finally get to cook for coles mom after we moved up here. I made my roasted potatoes and veggies with apple juice. i am looking forward to one day cooking at my house for both his parents.   

When I was out with jellybean today we where trying to decide where to go for lunch but I have not eaten out alot yet in kamloops and don’t no my way around. But she made sure we found a place I could eat. I like it when they ask me about my “allergies” and want to learn about PKU. Last night Jellybean was trying to explain it to her 2 year old. It was very touching.  How she explained about my special milk and that I cant eat foods.  She has us over for dinner once just after we moved here to and she wanted to make sure there was food for me! She made a wonderful dinner and we had lots of fun. I really enjoy sharing meals with friends and family. Its a nice bonding time and nothing is as great as good food, friends and family and movies or games night. I love to host and entertain. alot of my pku friends and family ask me how to not feel left out or what I eat and if i feel self concious. BBQs are also a big question but I love BBQs. we had alot back in victoria with friends and we have bon fires and parties in the summer at the ranch and they are always alot of fun!

I remember in high school I hid my PKU and would not eat around friends. I did not feel comfortable talking about my PKU . I use to be bullied by the way my formula smelt or what my food looked like. It does not bother me anymore. I feel empowered now , and when ever someone asks me about what I am eating or why I dont eat protein and what my formula is I jump at the chance to tell them and educate them about PKU. Its my chance to spread the word and with one more person knows what PKU is , they can pass it on to someone else and one more person who knows, is one more person closer to it not being a “rare disease”

That is all I can ask for after all!

Well I guess that is officially all for tonight. I just wanted to share how wonderful cole and his family is and how much impact they have had on my diet and my PKU.  I am so grateful for them! 

Good night all! 

Happy 47th Birthday to my mom!

Well what a busy day today! I am so tired now.  I had the pleasure of spending the day with coles cousin who I call Jellybean. Jellybean and her 2 adorable little girls, and there aunty came for a visit and spent the night with us yesterday. I made a big dinner for us all. I made roasted potatoes and veggies, salad, and a roast for them and cole.  We even made Yonannas for dessert. I was in so much pain yesterday so we all went to bed at 9 pm , but we hung around after dinner for a bit in our jammies. gotta love sleep overs! 

Today we had a super busy day, I was going to have a PKU baking day with my PKU friends up here finally but I wanted to spend as much time with jellybean and her family as possible. So we got up early and had to take her kitties to the vet to be spayed. Thats why she was here. Her 2 kitties stayed in the basment last night and I guess because they are female figaro didnt have as hard as time as he did when Amanda Js kitten Cacoohn spent the day here. 

After that we went to Mcdonalds for breakfast. I have not eaten at Mcdonalds in proboly 10 years. I just had to hashbrown patties and some maple syrup ( also a weird food thing my grammy started me on as a kid) 

Then we did some shopping and went for a swim at the TCC center, followed by more running around and shopping . Then we stopped at whitespot for lunch. I had a vegetarian rice bowl with tai sweet chili sauce. So i know my level for tomorrow will be high. it was a special treat though. i don’t eat rice regularly anymore.  When I got home I crashed and had a nap, followed by a bath for an hour. Now just waiting for cole to get home so we can have dinner. I have an upset stomach. I feel dehydrated but i am drinking water. I hope it goes away soon though. I am going to make a low protein dish for dinner since I had a high day .  I am proboly just going to make aproten ditalini and mushroom soup. 

We went to superstore while we where out , I have not been there for a long time now but I did end up getting a few things. They carry my kingsmilll bread under a diffrent name now, So i got one loaf of the white rice bread, 1 thing of the gluten free prezels. its 1 gram of protein for 32 pretzels.  1 pkg of the gluten free lemon wafters that i just love. 1 gram for 4 . and 2 cartons of strawberry so delcious coconut yogurt. Finally found the strawberry!! every where I go they only have blue berry and vanilla. I dont like either. So thats why i bought 2. Am planning on going to the gym tomorrow but after that I am going to bake some bread and pizza pops. So planning on having my yogurt and pizza pops for lunch :) 

My level came back from January 20th it was 6.6 . Still higher than what I want to see but the clinic is happy with it.  My goal for February is to get them to 4 . 

well that’s all for now! 

have a fabulous night everyone! 

xoxo Amanda C 

For as long as I could remeber I have wanted to be a mother. Even before I understood what a mother was. you would ask me what I wanted to be when I grow up and it was a mommy. I was a mommy to all my dolls and even would put them under my little shirts and pretend to be pregnant. 

This was my dream, even though my clinic and my family told me I would never have kids. The risks of having a mentally disables baby was to high.  Untill I was 18. Then the adult clinic told me that was wrong. There was no reason why I could not have a normal happy healthy baby IF i followed the maternal PKU ( MPKU) pre conception diet.  6 months prior to conceiving, during conception  , through out the pregnancy and if so , breastfeeding too.  Thought it seems daughtning and almost impossible there was no going back for me. I knew that some day I was going to be a mom.  I didnt care about anything else. There was no way they could take this away from me now. 

So here I am at 26 years old, in a committed relationship of  7.5 years with the same man. Whom i love with all my heart, Childless.  And my dream is weighing on my shoulders and I am feeling the baby fever. However Cole is not! he is not ready for a baby and is as well scared of the risks.  I have been on birth control for 10 years. We cannot afford an surprise. Every day that goes by I worry about the effects those chemicals are having on my body and my chances of not being able to concieve.  I have nightmares of never having my own biological baby. ever.  That maybe there is something wrong with me. That maybe my PKU will cause something to go wrong. The pressure is all on me. When we decide we are ready, if my levels eleveate, if i get sick , if anything happens, its all on me. I can tell cole knows that. There is nothing he can do.  I do not believe in abortion. However I do also believe it is not fair to bring a child into the world who will not have a fair chance, that will not have a quality of life. I know it sound selfish but I cannot have a mentally challenged child , or downsyndrome or deformed. it is not fair to the child or to cole and I. i cannot be selifish though because I tell myself god does not give you more than what you can handel. even if you dont feel that way.   I really feel that if i did not have PKU we would have already had a baby. It is so fruserating to me.  Everyone around me are having babies, even 2 or 3 . Cole and I have been together longer than anyone else we know. Yet we are not married or engaged and we have yet to start a family. Yes we have a rocky life, ups and downs but our relationship is solid. our love has never wavered. We have seen our friends, get together, get married, have kids and some even divorce and we have been through it all.  

I have talked to cole about my feelings many times. I always thought id have a baby by the time I was 26. Now that is certainly not going to happen.  i worry about when cole finally decides he is ready that it will take to long. Not only will I have to do the pre conception diet for 6 months prior, but AFTER that then I can go off birth control ( cant go off if while on pre conception because cant have any surprises if levels are not yet stable)  and after going off birth control it can still take months or even years for my system to adjust. So my dream seems to be still years off to far. I never wanted my first baby in my 30s and I have only ever wanted one baby.  My family does not support me and I cannot tell them how i feel , I cant even talk to them about it. They do not understand my desire. They tell me to adopt or surrogate. I will not do this. I want to make and carry our child. i want to experience a pregnancy and feel my baby grow and change and develop. I want to experience a labour and birth. I am so jealous of everyone around me and how easy they have it and they dont even know it.  I am trying not to grow resentful but every time I see new ultrasound photos or tummy photos I wonder what about me. it is truly my only I HATE PKU moments. 

I understand the risks, I know what can happen in an unplanned pregancy. I know that my PHE levels are double in the uterus and are toxic to the baby. I know what can happen to my baby if i am not healthy.  SO that is my focus right now, making myself healthy.  Cole and I talked and he said if I can prove that I can be consistent with my diet and keep my levels down in range for 6 months then we will talk again about it.  So essentially I am trying to do the pre conception diet and not fall off track. This is my 3rd attempt. It is hard to stay motivated when I know cole does not want a baby yet and we are not actually really planning.   No one thinks i can do it.  I have always been able to bring my levels down for months at a time but never consistently.  So that has motivated me, as well I have been dreaming almost every single night about my future baby. I dream of a girl , I already have a name picked out. So my dreams are weighing me down and focusing my goals and my motivation. I am going to try to do this . I hope cole changes his mind soon. I dont no how long I can wait. Dont get me wrong. I would never push him or force him. i could not live with the guilt or want him to day to resent me. As well I would never leave him. So i just wait and wait and wait for him to be ready. 

Its almost the same with marraige. I always believed firmly in marraige before baby. I want to be married, have the same last name and time to enjoy being man and wife before a baby comes along. And i feel like  I am running out of time. Everyone tells me I am still young, I have plenty of time. 30 is still young and a great time to have kids. But thats not what I planned. thats not what I wanted  Ideally , if all goes well and things change id like to have a baby in the next year or so! 

So I am working on my PHE levels and bringing them down between 2- 4 mm/dl and I am doing weekly blood tests. I am tracking everything and I am working on looseing weight and making my body healthy.  If I can do all this and am successful then maybe my dreams and my goals will become a relatilty. 

fingers crossed!! 

My mom.

This will be a difficult and emotional post. This post is about my mom.  I love my mom with all my heart and soul. We have had a rocky relationship over the years but no matter what my mom has always been there for me. Sometimes we dont see eye to eye, sometimes I dont agree with her, sometimes she is negative and rude. she is also funny as hell and beautiful , and in her own way she loves all her children to the moon and back. We have our differences ,  But by god I love her.  There is no bond like a bond of a mother and child. As you grow up and learn your mom is not perfect but damn she did the best she could. I gave my mom alot of grief  to. I worry about her and the impact I made on her.  When I was first diagnosed , my mom was 20 years old. It was a very hard time. I spent alot of time in and out of bc childrens hospital as a child. i spent my first 6 weeks there and was back and forth till i was 5 years old.  I dont remember what happend as a baby but i no that it traumatized my mom.  My mom has told me stories and the horrors she faced. How she felt like i was a guinie pig. poked and prodded and tested . How far she was pushed and how she had to be my only voice.  I have seen photos of me in a crib with cords and wires all over my head hooked up to monitors and I can see the tears in her eyes in the photos and as she tellls me the stories. She tells me how sick I was and how much I could not tolerate my formula. I projectile vomitted and was constantly covered in vomit , in my crib my clothes and my hair. My mom actually tried to take my out of the hopsital and had socail serviecs called on her.  Eventually they had to send her home and keep me there.  It was a very sad time in our history but she never gave up. She never gave up on me and she did the best she could for me. As I grew up my mom made me my meals, my foods, my menus, she made my formula and she stayed up so late at night making the math and the calculations work. She pleaded and bagged me to do my blood draws. She made the day special and took me shopping and gave me stickers.  as i got closer to 12 and 13 years old I began to lie and cheat about what I am eating. I was always a very picky eater. idid not want to eat what my mom had pre planned for me. Also I was hungry and the meal portions where way to small. I hated my formula and I refused to drink it. I made myself very sick. I suffered from high level symptoms. That I refused to believe where from my PKU. My mom fought and pleaded with me and we argued alot.  I had anger issues and was a real drama queen. my emotions where hightend along with teen age hormones and high levels was a bad mixture.  All the time my mom never gave up on me. behind the scene she was working to get me admitted to the hospital to be withdrawn from my high levels.  I was admitted for the first time on my own for 6 weeks. That was the first time. The second time was when I was 17 and it was for 2 weeks.  I never really understood the damage I was doing. I saw my mom cry and I saw her pain and her frustration. I just turned away. I didn’t hear it. I didn’t want to hear it. I cant imagine the pain I caused my mom.  it tore us away. She never stopped loving me and I never stopped loving her but it did have an effect on our relationship.   But no matter how much I argued and fought her she was always there for me . I was bullied and beaten up by peers and harassed about the smells of my formula, my weird foods and me personally. I was treated like there was somethign wrong with me. and for a long time there was.  I was always involved in drama and problems at school. I always was right in the middle of drama., My world was a mess. between boys, falling grades and failing school, fighting at home and my emotions things where a mess but whenever i was in trouble my mom was there to bail me out. or to be by my side. fighting for me.  she was always at the school or talking to teachers or other parents for me. fighting my battles that i could not fight.  i never really understood what she did for me.  I never really understood what she sacrficed for me. I never really got what a parent with a pku child went through.  untill i started meeting other people with pku and parents of pku children sharing there stories with me. It gave me a hole new prespective of my own life and my moms.  We have grown apart over the years but i think of my mom all the time. whenever i am upset or something bad has happened i always want my mom no matter where we are at in our relationshup. if shes mad at me or if we are not talking i always call my mom and she always takes me back. shes always there for me. So in turn this post is a tribute to the scarfices she made for me to be healthy and have a good quailty of life.  for raising me to be the person i am today and for giving me the head start i needed to make it on my own and to teach me right from wrong, for supporting me, for being my advocate , for being my voice and for doing her very best.  So thank you mom. I love you. xoox