Baby Number 2 / Maternal PKU journey 2, facebook, Madelyn, Managing the diet, MPKU Journey!, News, Social Media, That's my PKU life

PKU Awareness month means, Maternal PKU awarness too!

Posted on May 1, 2019May 1, 2019 by Amanda Horner

For #pkuawarenessmonth I will be mainly focusing on the miracle and wonders of maternal PKU Syndrome. All of my life I was told I would never be a mother. Hearing those words does not make the dream die, it does not take away the wish. It does not take away the hope. It does not prevent you for wishing and praying. As the years melted into each other the want never went away. In 2006 I was told for the first time, it was possible. That it was alot of hard work, that it was not for everyone. Well neither is motherhood, pregnancy or parenting. Hard work does not scare me. When the want is there, you can do anything you set your heart and mind to. I relate to those who struggle with infertility and the want to be a mother but for other reasons. I relate to the heartache and the deep deep passionate and consuming want. I relate to the heart work. Though its not doctors tests , injections and treatments for fertility. Its keeping my blood , my body, my brain and my uterus from being toxic.

For many PKU women , its months and months of planning. For many its returning to diet and treatment. Its many months of preparing the body. For preparing your brain. For many its withdrawing from toxicity of high phe levels and side effects. Its adjusting your body to major food changes, to major life style changes. How do they do this?

With the recommended maternal pku pre conception diet and treatment. It is highly recommend that any women with PKU who wants to have a healthy sucessful pregnancy and healthy baby follow a even more restricted treatment then normal , to get their phe levels even lower into pre conception range and keep them there for 3 to 6 months prior to conceiving and then the duration of the pregnancy. I didn’t have this chance. I did things back wards, looking back its totally way harder. both of my pregnancy’s where unexpected and unplanned. But very very much wanted. I prayed to god, I prayed to my deceased grandparents, I prayed to my grammie in heaven. I talked to her regularity. I dreamed. I wished. I wished on ” the first star I see tonight” when the clock stuck 11:11 am or pm. When I had something lucky. I hoped. I held on. I pleaded, and I bargained. Please god, let it be me one day. Let it be my turn. Bless us. Choose us. I promise I will give it my all. Please let it happen one day. Please change his mind, please want him to want this to.

Both times I found out I was pregnant my levels where very high. I was not off diet, I wasn’t compliant. I made allowances. I ate rice, and mashed potatoes, and corn and hash browns. Vegetable sushi, peas, beans, and sooo much rice.

I indulged. I did not weigh my portions. I did not keep track of my intake. I made allowances, and made excuses. Its to hard, Its not fiesable, its not sustainable, i’m to hungry. Its only me that suffers the side effects. Im not hurting anyone but myself. I will do better tomorrow. I will eat less in the morning so I can eat more later.

Having to crash my levels down with in a week, having to re learn the diet, re learn how to cook low protein recipes, how to measure everything. How to track everything. All at once, plus come off anti depressants , anti anxieties and pain medications all at once. If I could change one thing, I would have done better at looking after myself, managing my PKU and actually planning for my babies I would have. But you know what they say about could have, should haves? and if you change the past you might not have the same present or future. I would not change my life for anything.

For I am a mother.

The fact that my daughter is here is truly a miracle in its self, Life is a miracle, growing, creating and giving life is a miracle. Pregnancy is a miracle, but then add my PKU on top of it.

Now here I am about to bring another baby girl into the world. The weight of it is not lost on me. Through all the highs and the lows, through all the tears and sleepless nights, through all the struggles and all the ups and downs, through the smiles and the I love yous, The way my precious girl looks at me, I wouldn’t trade a thing for this life ive been blessed with.

Its not always easy and sometimes we get lost in the moment and we forget where we have come from and anxiously worry about tomorrow. But its worth it. Its worth every single moment. Id gladly pay for every second through this life and eternity.

There is no bond like that of a mother and her child. The bond I have my daughter is everything I ever dreamed of. I cannot simply express in words the depth of my love for her . I see it reflected back in her eyes and its so powerful. It is deep and beautiful and powerful. The way she holds my hands, touches my face, the words that she says, the joy she experiences , the happiness she is and gives, that she lives and shares. Its worth it all. Now that she is such a fluent talker, her vocabulary really floors me. She talks better then some 4 and 5 year olds I know. She really expresses herself, she speaks her feelings and her thoughts and the wow the stories she tells me. The way she tells me she loves me, and how i am the best swimmer ever! make me burst with pride. How even though she is a very strong willed , independent, vibrant , busy 3 year old, she still needs and wants her mama. She still wants our cuddles and our talks, our hugs and our kisses. I will always give her all of me.

It excites me to hear her talk of her baby sister, the stories she tells me about how she will be a big helper, how she will hold and change ” her baby” and all the things babies do and how her baby is in my belly. How every day she tells me what she wants to name her baby. It makes each day that I struggle with this damn life, this damn diet, and these damn foods worth it.

Each day when I have to test my blood, and drive it to the lab, Each day when I sit down at my computer to record every gram of food I have eaten, when I plan my meals in advance, when i make my food, prepare my formula. I am reminded why. My daughter is why. Both of them. For every high risk OB appointment, every midwife appointment, ever extra ultrasound, trip to Vancouver maternal fetal medicine, every email to dietitians and specialists, every panicked phone call, every kick and roll. Every thing I am doing its to give my children the very best start in life. To ensure their health and ensure their futures. The literately weight of their life hangs souly on me , and what I eat.

They say being a parent is always putting someone else before you, and I do that by watching and weighing and counting every single thing I put in my mouth every single day and more. I do it because I am so much more then me. I am their mother. I am a parent. I am a partner and a wife. This is just one part of my life and my daughters. This is how I give them the start in life they need and my care and my devotion and my love and my hard work grows with them and my role changes. From the day they are made, to the day they are born. To all the years to come, I give them all of me.

If anything having PKU has taught me so many life lessons. It has taught me hard work and sacrifice, it has taught me patience, it has taught me how to be strong. It has taught me how to give, and how to be a voice. I use my voice in hopes of inspiring others. To help even one person know they are not alone. To provide support, to provide education, to spread awarness.

Many wonder why I do this year after year . Why I share my story so personally. Why I am so open, why I blog, Why I volunteer for CanPKU , Why I plan fundraisers and events, and why I post soooo much about PKU.

Well every year that goes by I am grateful for medical advancements , for changes in treatment and new research. For being alive and being healthy. For new born screening and I am proud to be able to use my voice to spread awareness . For each new friend I’ve made through out the year , for each new follower who does not know my story , for each new baby born , for each new diagnosis , for each new family effected , and for each new maternal pku mother…I share for you. If I can help just one new person by sharing , that is one more person who feels supported , one more person educated. And 1 by 1 more people will be aware and pku will be less unknown , less scary and less rare !

Remember, together we are all #PKUSTRONG

Happy PKU Awareness month! thanks for following along. I look forward to connecting with many of you this month through social media. Through Facebook lives, though live questions and answer videos, through Instagram and Facebook. Please feel free to share, write me a question you would like me to answer a topic you wish me to cover!

Madelyn, MPKU Journey!, That's my PKU life

1 vs 2

Posted on November 12, 2018November 12, 2018 by Amanda Horner

How do you know? How do you decide? when your ready or not for that second baby.

No I am not pregnant. We have no plans to have more children. But There is a part of me that constantly goes back and forth. Sometimes I think it would be nice for M to have siblings. Then other days I worry. I worry a lot.

How would it change things? Our family works so well. M and I have such an amazing and close bond. She is my whole world. I cannot imagine sharing my attention and focus away from her. not being able to give her my 100 % . I know how time consuming and how much attention newborns need. What if I cant be there for her to? What if she pulls away from me because Its not the same , or she gets jealous? Or she wont understand? Will I ever get our closeness back if i loose it?

What if it makes her unhappy? what if she never adjusts to sharing her parents? what if we wait to long and the adjustment is just to hard?

When is a good age ? Is there such thing as a good age gap between children? Am I already to late? Have we waited to long? Am I running out of time?

I have always been told to not have children more then 3 years apart because it makes it so much harder on the first born. Well M will be 3 in march. Does that mean if we cant decide or have a baby in the next year that we are done and its to late?

I dont really want to have baby 4 years apart or after 34 . I am to scared of the risks that come as we get older plus the added risk of PKU. I am 32 right now.

We are so not on the same page cole and I about if we should.

Some days i am fully content to be 1 and done. I cant imagine loving another child as much as I love her. Shes prefect! How can you match perfect a second time!?? nothing and no one can be as good as her.

I wanted her for years before she became. I prayed for her, I wished for her. Every superstition. On stars, If I saw the clock change to 11:11 , on falling stars, on anything that brought good luck. I prayed to god and to my grandma in heaven to send me one happy healthy beautiful baby girl. she is the answer to all my prayers. I never thought it would be possible for us to even have one baby. She is my miracle. Am I pushing it for asking for a second?

What if the pregnancy is harder? what If I am more nauseated and more sick? What if I cant keep my food and formula down? what if my levels arent stable? What if its unplanned again but I dont catch it in time? What if i gain to much weight? what if i end up with diabetes this time? what if its a difficult delivery this time? What if something is wrong with the baby? Or the baby is born sick or has colic? Will we manage? can we make it? Are we strong enough?

Being pregnant with M was an amazing experiance. I was so lucky. I really treasured every moment because I never thought i would get the chance. I loved learning about her development every week, tracking the progress , watching my belly grow. Feeling her grow and move and kick and roll. It was both the hardest thing I ever done but also the most amazing. The 3 times a week blood dots where hard, driving them up to the hospital all year round. The large wack of blood work every trimester. The traveling to Vancouver every trimester, the weighing, tracking and recording of every single thing i touched or put into my mouth. I worked so incredibly hard. Never have I worked harder. I did everything 100 % in my power to make sure my baby had the best chance and the best start at life. What If i cant work that hard again? what if i was only able to fully dedicate myself to her was because i wanted her so bad? what if wanting another less some how effects me subconsciously and I dont work as hard?

I had the best delivery experiance with M that i could have ever expected. I was able to deliver naturally . I did need the drugs in the end and I am so glad I took the epidural. 36 hours is a looooong time lol. But then she was here, she was ours, she was mine. I will never ever forget the feeling when they placed her on my chest for the very first time. my daughter. My first real good look at her. I looked her all over and touched every part of her to make her real, that she was here and she was healthy. My heart grew so much i felt it would burst. I still feel like that so often. Watching her grow and learn and play. She is amazing. She has changed so much. She is playing pretend now and making her toys talk, she is imagining. She loves to paint and play tea party. She loves our dog copper. And she talks alot! for 2.5 she says alot of words and talks alot. She can carry a full conversation. she is so independent and strong willed but she still wants to cuddle and be loved and snuggles. She still reaches for mama and needs me and asks for me. I am so proud of her , their are not enough words. I have never know a love like this. I am extremely protective and proud. I finally get why they say “mama bear”

Can i feel like this again? Can I be this twice? Do i have enough room in my heart? because seriously it already feels soo full , to every corner of my soul.

near the end of my pregnancy with M I thought , wow I can so do this again. my body is made for this. this was almost easy. I started to be able to picture 2 children, not just one. I let myself dream . I would never have more then 2. Coming from a family of 5 and being the oldest , as well as watching all of my friends have 2 or 3 or 4 or more I know 2 is my number. Id be done after 2 . Tie my tubes done.

Even after she was born for the first few months I was like yup I can see 2 kids running around our home.

Then my love grew and grew and grew for M and my anxiety too. I didnt feel like I had anymore room. The fear I have for her , keeping her safe and healthy is a full time job. Making sure shes happy and her needs are met and challenged. That I am giving her my best. Then the fear and anxiety of having another and changing our perfect little world.

so I ask again. how do you know ? how do you other moms know when you want more? did you always know? did you change your mind? what changed your mind? How do you cope?

I have only recently started entertaining the idea. I see mommies from mommy group that i joined having a second or third already. Dealing with a newborn and a toddler. Seeing their photos their toddler and the newborn bonding and loving each other . I dont want M to be lonely. I know I run a daycare and she has cousins and a large extended family, but their is something special about a sibling , specially when they are close in age. I dont have a very close bond with most of my siblings. Large age gaps, different dads and distance between where we live. We where closer before I moved away. they are mostly teenagers now and I am in my 30s with a family of my own. I think the larger age gap has been the toughest gap to over come so thats why I am feeling the pressure to make a decision soon. I dont want to wait to long.

But I dont feel 100 % ready yet and of course Cole is way far away from even considering it. But If I can sort through my own feelings maybe we can come together and talk and make a plan. But I am so worried about running out of time now. Madelyn will be 3 in march so if we want to have another baby before she turns 4 and I turn 34 we dont have alot of time. I always said if we decide to have another it will be planned by both of us and i will do the pre conception diet this time around. Finding out at nearly 4 weeks with M added so much stress until the anatomy scan at 13 weeks i was constantly worried if i got my levels down i time. I dont want that worry again. Also M was not planned. she was a surprise. For us both. Cole had always said he didn’t want kids at all so i was terrified of how he would react but he was amazing from the very first moment on and has been every step of the way. He is the most amazing daddy and you can see how much they love each other. He says he wouldn’t change it for the world.

He has his own reasons for not wanting another, the biggest being my PKU. We where lucky, what if we arent again? that is a big risk. My health is a big risk. But I did do it. so we know I can.

I just keep having this argument in my head over and over again. Around and round with no answer in sight. When I look into the future sometimes I can see myself and cole with 2 beautiful daughters who have this close sisterly bond.Other times I see only madelyn.

I have been having alot of dreams lately about being pregnant again. They use to scare me but now they dont as much. Sometimes I see sharing the special moments with M , having her kiss my belly, or feel her sibling move, having family maternity photos, Seeing her hold a baby sister in the hospital room kissing their forehead. Sometimes I feel all the feelings, fear and excitement. I wake up with the feelings lingering through out my day,

I never picture a boy or a brother lol because the thought of having a boy terrifies me lol

I think its weighing heavily on my mind lately cause I have these 2 day care girls in my care, who also happen to be my best friends daughters. Madelyn has grown up with both of them. They are her best friends to. She calls their mom aunty and the girls call me aunty. They are apart of our family. They are 3 and 1 . so M is 2 right in between , she has watched the youngest grow up from birth. the older one who is 3 calls the younger one her sister all the time and M called her sister once to and i corrected her and i told her she didn’t have a sister or a brother because mommy would have to have another baby but the girls where her best friends. she said ” ok mommy i want a brother then” She totally didn’t understand what she was saying cause she dosent know what a brother is but it just shocked me so much. Maybe it would be nice for her? she is such a social child. I dont want to deprive her of that. I just wish i could know for sure if she would adjust ok or not? Would she still be as happy?

can we handle the sleep deprivation again. ? can we make it through the newborn phase again? it was tough and it did change cole and my relationship a little. Can I manage a newborn? a toddler and a daycare? Can we afford it? Will our relationship survive? there is just so many what ifs to help decide . Just how much will it change? Can I even begin to understand ? will i regret the changes? Will i regret rocking the boat?

Our life is pretty manageable and happy right now. Why should we change that? as cole says, why change something that works so well?

not to mention we arent actually married and my children have a different last name then me. that bothers the fuck out of me so much. My last name is from my step dad. Its not even my last name. I dont want to carry it forever. I hate having to show ID when i book appts for M and I or i take her somewhere health related. Cole and I have been together 13 years so we are practically married, but at the same time we are not. It is looking like we never will be? Can i be ok with that and have another baby i wont share a name with?

I dont know what to do. I dont know how to decide. I had hoped by sharing this and writing it all out, that maybe it would give me some clarity or answer any of my questions but i am still just as confused. I think I want another, at least a part of me. It would be nice to experience another pregnancy and knowing it is the last. It would be nice to see M bond with a sibling and grow up together? At least i think it would? will it? maybe?

Maybe only god can know and he will decide for us if its in our path. I just wish I had some sort of sign or clue.

Madelyn, Managing the diet

3 Different Diets + 1 Family = Learning Curve.

Posted on November 16, 2016November 16, 2016 by Amanda Horner

Madelyn is 8 months old as of November 4th. She is doing amazing.

monthlys6

Madelyn can now walk around the table and from couch to couch while holding on.
She climbs the baby gate
chases copper and figaro.
She says mama / Dada and hi !
She is getting better at sleeping in her crib, though we still co sleep at the beginning of the night.
She is learning to wave and clap
She hums / sings to music
She likes to pull mama’s hair and jewelry.
She has 2 bottom teeth and working on another one soon.
She loves to stand
She pushes her toys around while walking.
She stands at the toy bin and pulls all the toys put then puts them back in
She pulls her self up onto everything.
She’s very busy and vocal
She is easily entertained by others and loves to watch other kids.
She has a new baby cousin. A boy! Who she will stare at and smile..
She loves to put anything Into her mouth .
She’s fast!
She celebrated her first thanksgiving and Halloween this month.

She still wears size 6 months clothing.
She got a new 3 and 1 car seat and jogging stroller this month to.
Her favorite foods are fruits and vegetables. Specially carrots and bananas. She prefers to feed herself. She tried many new foods this month like pancakes / toast / sole fish and rice.
She got her first cloth diaper.
She loves her elephant pillow and toys.
She had her hair up in a pony today for the first time.
She loves to sit and play in the bath tub every night as part of our bedtime routine.
She still loves her swing.
She does not like eggs or asparagus. She does not like her crib but it’s getting better.
She does not like the jolly jumper.
Our baby is growing and changing so much that I’m constantly astounded and trying new ways to challenge her and keep her busy while teaching her new things. Trying my best to keep up !
She weighs 14.6 lbs
I love her smiles and the way she giggles and the sounds she makes when she’s talking to you. I love the way she gives open mouth kisses and says mama and Dada.
I love our cuddles and watching her sleep or watching her play with her toys and interact in her environment . She so happy and full of smiles and giggles !
#daddysgirl #mommysworld #babygirl

At 6 months we started weaning. We started with home made purees due to her dairy allergy. I made everything from scratch. We started with baby organic oatmeal and slowly started adding purees , introducing one new food every 3 days. but with in a couple weeks we started to introduce baby lead weaning and she took to it so quickly and it was clear she prefers to feed herself. She is such a great eater. I was so worried about choking and feeding her this way. I did my research , I read books and talked to other moms and joined groups on fb.

now at 8 months old , she is currently sitting next to me in her high chair eating oatmeal bars that I made her the other day.

She already has such a variety of foods. She is not a picky eater at all like I was. I am always amazed buy how strong her little jaw and gums are to be able to eat foods with out many teeth! One thing I love about baby lead weaning is that she is learning and challenging herself and developing skills and fine motor skills. By feeding herself she is control. She eats as much or as little as feels like at the time. She controls what is going into her mouth and how much. IF she puts to much in her mouth at once, then she gags and she learns not to put that much in her mouth. So far she has not choked on anything. she sometimes gags and clears it herself. I always sit beside her while she is eating. I watch her closely.

Babys gag reflex is a lot closer to her mouth then the back of a throat in an adult. So by feeding herself shes engaging this reflex and preventing choking. Babies who are fed purees on a spoon , we the parent place the spoon past this reflex and when they move to solids, the reflex has moved further back with age and they dont gag as quickly and it can lead to chocking.

Madelyn’s diet so far includes :

Toast and jam

Fruit – specially berries, banana, mangoes, peaches, pears , apples, papaya and avocados.

Steamed vegetables – Carrots are her favorite. Broccoli , cauliflower, Roasted vegetables like yams, potatoes and squash, sauteed veggies like mushrooms, peppers, onions , tomatoes, garlic .

Oatmeal

Rice

pasta

quinoa

fish/ sole and cod mostly.

chicken

sausages

pancakes

scrambled eggs with dayia cheese

we use coconut milk as a substitute when cooking or baking.

She is on a special formula for her milk protein allergy. She drinks nutramigen. We special order it from Vancouver just like my formula.

We omit dairy and milk from her diet. I dont cook with it and she has not had cheese or yogurt. I make most of her food from scratch or fresh ingredients to avoid it. Any thing store bought i am very careful to read the ingredients so it does not contain milk soy or whey.

Most days I am cooking 3 different meals at breakfast and dinner. She does not eat lunch yet. Cole has a regular diet, no allergies. Then Madelyn’s food , and my low protein. Though admittedly i have really let mine slide since the days i use to bake or cook or meal prep for me are now for her.

This has lead me to deal with some mixed emotions and thoughts surrounding having pku.

The other day I was in the kitchen making Madelyn some new foods to freeze. I was making her home made oatmeal bars ( oatmeal , water and fruit then baked in the oven) and some quinoa fruit balls ( 1 1/2 cup quinoa, 1/2 rolled oats and fruit of our choice, rolled into balls then baked in the oven for 15 mins) and i realized that I cant eat as healthy as her. I eat healthy for me, but nutrition wise, my diet is not as healthy. I cant even modify her recipes or make them PKU friendly. I dont even have anything similar in taste of texture. I have made such an effort to ensure Madelyn is eating healthy and having a variety of nutritious foods. A well rounded diet and striving to give her the very best so she does not develop issues with food like I did. I want her to have a positive relationship with food. I dont ever want her to feel how I feel. I realized i didn’t want her to feel shame when she eats. It made me sad, cause I thought back to my youth and remembered when i use to hide and eat alone. Because I felt shame. I hid in my room at meal times . and refused to eat at school in front of my peers as they always asked why my food looked weird or why i drank that stinky milk.

I developed weight issues and still struggle. I dont want to pass these onto my daughter.

Now that Madelyn is eating more and more, I am finding myself struggling with resentment towards having pku. To being angry and frustrated. Baby lead weaning books recommend we all eat together or eat the same thing and that whatever i am eating should be safe for my baby to eat should she want to share or try from my plate. But I cant share my foods with her.

This morning that became more evident. She wanted some of my toast. My low protein bread. With honey on it. So one babies cant have honey before age 1, 2 its white low protein bread and not very good for her. So I had to tell her no and she cried. She didn’t understand and it hurt my heart.

I dread having to explain to her one day, that mommy cant share her food, though we teach children to share most everything but food. Or why mommies food looks different , or why i cant eat what she is having. or when she reaches her little hands up trying to share her food with me and i pretend to eat it but dont actually. One day she will notice. One day I will have to explain to my baby girl that mommy is different and tell her about PKU. She wont understand at first, there will be alot of questions and I will probably have to tell her several times as she grows up.

I think back to when I was pregnant and my tolerance went up so high and I could eat real foods and the healthy and nutritious foods I had to choose from. The healthy choices and options that suddenly became an option for me . Like oatmeal, oats, real bread and whole grains and rice. Not white sugary and full of carbs o nutrition. I realize now that those options are only available to me when i am pregnant.And I suddenly realize now why treatments like kuvan and peg pal are sooooo important. I am considering trying to make it through the kuvan trail again to see if i am a responder. If I am not , then hopefully one day I can try peg pal. I didn’t think i would ever want to. I use to think the diet and formula was enough and I wasn’t worried. But now I think , given the opportunity , I would jump at it. I want to loose 6o lbs and I want to eat healthy and clean and still feel full. Something I struggle with on the low protein diet. I want to eat like my daughter. I want to eat oatmeal again. I am learning so much more about nutrition when I thought I already knew so much and I am feeling more limited then ever and wanting to feel “normal!” I dont know anyone or myself can loose weight on this diet and still feel full and satisfied. I over eat because i burn through the low protein foods and fruits and vegetables way to quickly. I have way over the recommended calorie intake for a women of my age. But when I think about restricting myself , going back to limiting myself, going back to tracking calories and protein and phe . I think about how hungry I am. I feel guilty that I was able to excel when i was pregnant and stick to it so amazing for 10 months only to fall back after. Then I think to myself, pregnancy was easier. She was taking everything she needed. As my pregnancy progressed or when I got hungrier my tolerance went up. I had flexibility and choices even when restricting. I wasn’t stuck at 375 mg of phe and 1600 calories for the whole 10 months. I was having like 2000 calories and never gained more weight then what baby needed. Now I cant loose the weight and am stuck here.

So maybe if I responded to kuvan or to peg pal , I could have a more regular diet, with healthier options like oatmeal, whole grains,and proteins that could fill me up more with out packing on the weight or filling up on low protein pasta and empty calories!

So I get it now, I get why we are trying to fight, why we need this passed. I get it now, being on kuvan or peg pal will give me the chance at a healthier life , with flexibility and quality of life with out revolving and focusing on foods. With out every aspect of life being impacted by food. It is freedom. normalcy. Wouldn’t it be nice if I was a responder despite having classical pku and one day when we have coverage I can eat the same as my daughter, loose the weight, be more active and lead a healthier life style and set an example for my daughter and our family I could be proud of, that i have always drempt of. When I think of the future, I think of being that soccer mom, an active mom, a healthy mom who can keep up with my kids. That has the flexibility to grab a quinoa ball on the go, or a protein bar, drink a protein shake, have a multi grain bagel or sandwich , real rice, nuts and seeds? I cant ever see myself ever eating meat. or a meat alternative like tofu. Yuck! I am not big on chocolate or cheese either, or crap foods. But yogurt ? that might be nice. Oh and not to be pregnant to eat normal lol.

This is my battle, my eternal struggle. I am sure I will adapt and meet these challenges in raising Madelyn as we get to them. Being responsible for my baby girl is a whole world of new lessons. I just hope I can keep teaching her, leading her , inspiring her and challenging her to be her very best. Most days I dont feel like I know what I am doing but I am trying my best to keep up to her. I never thought about the choices id have to make for her till she is old enough,. something as simple as what to feed her can have such a huge impact.

I can sympathize what is like for a parent with no diet challenges to raise a baby with PKU. I bet you feel the same as I do most days. Its a learning curve for us all and we just do our best. I am sure you are doing your best to. I tell you one thing, my beautiful girl is growing up so fast and everyday is something new. This first year has gone by so fast. Some days I am like wow , she is 8 months old, then others its like she is ONLY 8 months old. How will I teach her to be kind , to be a good person, to love and be respectable and give respect. to be honest, humble, compassionate. How will i show her this? The decisions I make for her now , will impact a life time. Starting with Learning to walk, to talk, to run, and one day their will be puberty and other obstacles to navigate. Oh the joys of parenthood. Non PKU or not, the challenges are the same. how we deal with it not only shapes our children, it shapes them to.

Madelyn

First meals.

Posted on August 15, 2016November 9, 2018 by Amanda Horner

Growing up with PKU your whole world revolves around food. Meal prepping, cooking, baking , measuring, weighing, calculating, and tracking. So much so that it becomes second nature , specially now at my age. I have been managing my diet since I was 13 years old. I dont really put a lot of thought into what I eat or the ” real” nutrition of it. My focus has always been on if its low protein and how much protein, vs calories vs phe. As I have had said numerous times I have been pretty slack with my diet. Then I was pregnant. And focus changes to counting every single gram, every single mg of phe and keeping my blood and body safe to help this little human grow and develop safely.

After giving birth, the focus changed to bottles and formula for us both. Mls of how much formula she is drinking and how often. Checking her weight and making sure she is growing and meeting her milestones. So much so that I let my own diet slip .

Watching her grow and change every day leaves me in awe. She amazes me. She can sit with help now. She waves, she giggles and says mama and dadda. She rolls around the living room and she reaches for us and she loves copper. We got for walks and she loves to explore. she loves to look around at people and observe.

Today we embarked on brand new adventure into the overwhelming and exciting worlds of solid foods. Madelyn tried baby organic oatmeal for the first time. This opens the door to so many new learning opportunities for us both. I was avoiding giving her solid foods till she was exactly 6 months as I read it was preferred due to their immune system being stronger and it helps prevent food allergies but she has been showing all the signs. So even though she has been showing signs for a while now, I was uneasy and was trying to avoid it. So I made the decision to try it and see what happens. She grabbed the spoon and chewed on it!

Ive been reading about nutrition for babies. I have been reading about baby lead weaning and what order to introduce foods and recipes. Since Madelyn has a milk protein allergy we are making her food from scratch. I figured I already make my own foods that it would not be any added work to puree up fresh foods for and freeze them. Trying to prepare myself for this day and what method to choose. I have decided to start with the baby organic oatmeal and then purees in the morning and then move to baby lead weaning.

The thing with baby lead weaning is you give them whatever you are eating but steamed or mashed and let them eat themselves and try the foods. So it has made me start to focus on my own diet again and remind me the importance of nutrition and whole foods. I am learning more about the foods I dont eat and more about nutrition and meats and proteins to make sure she will get the best nutrition. I dont ever want her to worry about her health or have hang ups with food and dieting and weight and health. I want to improve my own habits and lead by example for her . I dont want her to ever worry about food like I have.. I want her to enjoy it and I want her to be healthy. I want us all to lead a healthier lifestyle.

Over the years I have developed bad eating habits, specially when I am struggling with my weight like now. I struggle with portions and making healthy choices. I prefar 3 big meals a day and lots of carbs and warm foods. I am a picky eater . I do not want her to pick up on my habits and now that she is getting to the age where she is really watching us and learning everyday its time to make those changes. Starting with baby steps and first meals.

I am learning so much of this for the very first time. I never thought before about feeding a baby and teaching them these lessons. Leading a healthier life for us all. I have cooked for Cole for years and for friends. but never thought about those early times, the first foods, the first tastes, and the first experiences that form the foundation and the base of a relationship for food. The do’s and the dont’s. The how to’s and the recipes !

carefully planning, preparing foods for someone other than myself. What order to introduce foods, how to cook , prepare, store purres. What foods to avoid. I read you try one food each day for 3 days to see if an allergy starts. So today is offically day one of baby oatmeal!

a week ago she tried a peach from our peach tree. she took it from my hand and tried to put it in her mouth like everything else. She had no idea it was a food and got quit a shock with the fuzzy peel . She made the cutest face.

Then at a family lunch at a local restaurant last week she sucked on a cucumber from my salad. but today was the first real food, the first real taste, the first chew and swallow of many!

Madelyn is 5 months old and 11 days. ( 23 weeks and 3 days! ) Here is a video from our first foods today.

Dont mind the Gilmore girls tv show playing in the background lol

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