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

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.