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

Living with PKU has not always been easy. In fact I would not call it easy ever. Every day you have to think ahead, plan a head, measure, weigh, cook or bake and its a constant and ongoing as breathing. Eventually it does become second nature I would say. Really having PKU is a lifestyle . I am always watching what I eat , making decisions based on meals, time of day, what I have available and how I feel. I dont ever just eat with out thinking. Everytime I pick up some food there is information running through my brain. What size is this, what is the portion in measuring cups , how hungry am I , is this my best choice? what do i feel like that I can have. What have I already eaten today? Did I have my formula? Do I want it before or after I eat? Did I take my pills? What does the nutritional information say? how many grams of protein? how does that convert to phe? ( where is my food list book????) how many calories? What is the level of nutrition is this a healthy option? Then I have to remeber to right it down and calculate at the end of the day.  These are the things in the back of my mind that become so second nature I dont really notice or think about the process.  I have a system down pretty good. I wake up ,I grab my sports bottle and a straw. I take out my pills and I mix  I my formula, 1 package of MTE and 1 scoop of orange cream essentials in 4 oz of water in my sports bottle. I add 1 or 2 tsp of benefiber an I take my pills. I make my breakfast and pour a glass of water to drink while I eat. I sit down and turn on the news.  If I am working I prepare my meal to take , If I am off I go to the gym or the pool then come home and have lunch.  sometimes its as simple as grabbing something low protein from the freezer or I have to think and plan and see what I can have and what I feel like. am I cold? can I have something hot?  Do I want something light like a salad and a smoothie or do I want something more filling like a pasta salad? Is it wednesday is it my sushi date with the girls? IF im having sushi that means low protein for dinner. Now that Iam trying to be more strict and on track better I am paying more attention to nutrtion and healhy choices, but also to making sure I get a variety of the diffrent meal groups. I do not eat enough fruit and vegtables.  I am actually quit a picky eater. Nor do I drink enough water. So I am constantly trying to remind myself to be more open to foods and to having even just alittle bit is better than none.   I dont normally snack inbetween meals so After lunch I am able to relax alittle bit untill I have to start planning dinner. Dinner is a bit more complex as I have to cook for cole to. I think about if I am making 2 seperate meals? or what I can make that he can also eat? what he would feel like? what I have avalbile and what I ate that day. If I am making potatoes or rice and what vegtables to have with it? what meat to cook cole?  How big of a salad to make? if its only for cole or If I feel like some to, or if we are having company.  i eye ball most of my foods at this point in my life but If I am unsure I measure after I cook or bake and measure just what I am taking. 

All of this over the years has just become a part of life.  It has helped me to develop skills in diligence  organization, planning, time managment, and of course cooking and baking. 

Many people do not realize these thoughts of someone with PKU. As a child my mother did all of this for me. She measured and weighed my food. She decided what I was to eat , she planned my meals out on the fridge. She made my formula, and she did all my calculations . All I had to do is get up and look on the fridge to see what I was eating that day. As I grew up , I began to rebel. I never really thought about the reasons why. I think back now and I just got sick of the no control. I got sick of having it all planned for me and not liking the foods. I hated most the foods that where chosen for me, So I cheated. I would not eat what was on the menu and lied about what I was eating even when my levels where coming back high. I still would not admit it even when I ended up in the hospital admitted from side effects of the high levels. I would not admit to myself or anyone the damage that I was doing to my body. I also did not understand. It was not that I was not educated. I had it drilled in my brain from the time I could talk. I just tuned it out. Was sick of hearing it. I made myself so sick. In the long run no one suffered but me. I will never let that happen ever again.  I have my ups and my downs and its not always easy and I am not pefect. I try to get back on track when I fail and I start again, My motto has become ,” each day is a new day and a fresh start. What you did yesterday does not matter now, Today is a chance to do it over or do it better. ”  I do the best I can and that is all I expect.  I still struggle specially with keeping low protein in my diet. I get tired and I get frustrated with having to bake and cook all the time and sometimes I feel to lazy to do so, but than when I am hungry and looking for something quick and easy I have myself to blame for not baking a head of time. even still as an adult PKU is a learning process. I still have alot to learn! But my PKU is a part of me. It has made me who I am today and is my way of life. It does not control me. I control it!!! 

Well its been a few days since my last post, My days are all mixes up since working so many night shifts. I am starting to get a over night shift pattern developed.  I have been taking canned peaches and applesauce for a snack at 1 am and then I try so hard not to eat again till breakfast at 5 am. Where i have been having either a bananna or applesauce and one rice cake with 2 scoops of my phenly ade.  I am suppose to be lowering my scoops of phenyl ade and mixing it with mte but i am to hungry if i do that so when i am working over night i have the 2 scoops. When I get home from work I dont eat anything else and I go to bed . I sleep till 12 or 1 and then I wake up and have lunch  and dinner at regular time. I have a bigger dinner , usually something thicker like potatoes or pasta salad with 2 scoops phenylade.  Where as lunch I have the one and one with the mte. On my days off like tomorrow I will just have the one and one mixture. 

I have been really focusing on increasing my water in take the past few days. I feel I have been doing well except for today. Has anyone ever noticed the more water the drink the more you crave it? I have finally been getting in the recommended amount. I think i finally understand why people say when you are hungry you may actually be dehydrated, because my hunger is much more manageable since I am drinking more water. I also have lost one pound. I think its from the water. I dont feel as bloated and my pants fit better. 

I did another blood test on the weekend and will mail it tomorrow.  so they will have 3 im waiting for results to get back on . I am hoping this one is lower. I have been eating less and my intake has been under 300 for all 3 days prior to the blood work.  My calories where a bit high thought But I am happy I can do my own records again and that I got the new version of the food list. I know that when I get the blood level back i can go back in my note book and look at those days and see what I did and what changes I need to make. 

I bought a 3 subject notebook that fits in my purse. I take it every where with me and write down everything but i dont always calculate it every day, sometimes i go back and do  them all at the end of the week . each subject tab is a month. The first few pages are a list of my weekly weights, monthly measurements and a list of physical activity and what dates I went to the gym and what I did. It helps keep me organized and visualize my progress.  

Just going over my weekly plan for this week. I am starting yoga this week with a friend. and hoping to get back into the gym and pool this week. went for a lovely hike this weekend to and got some great photos so i am hoping to get out with my camera. 

Well thats all for tonight, 

best wishes! 

xoxo Amanda