Glytactin Restore Powder!


2017-04-22 10.53.27

 

Rave review alert! I am a big fan of the cambrooke therapeutics glytactin restore powder and I am about to tell you why!

During my pregnancy in 2015 I had to drink extra bettermilk and was adding mte amino acid mix to my formula and tyrsoine. After giving birth to my daughter my body still wanted the extra formula. But my clinic said I didn’t need it and it could effect my kidneys if I drank to much due to the amount of calcium.

I was in the habit of drinking 2 bettermilk packages and 12 oz of water at each meal so 3 times a day.   My clinic kept telling me about the risks and that it can lead to kidney stones and other side effects so asked me to cut back to 5 packages , which means at one meal , most likely lunch id only have 1 package instead of 2 . This didn’t work for me since its such a small volume so i ended up cutting all the way back to 4 package ( 2 with breakfast and dinner) cutting out my formula at lunch all together.  this left me hungry and had a hard time between meals specially lunch and dinner.

At BC PKU Day On April 1st in Vancouver I talked to our cambrooke rep about trying the Restore powder mixed in water at lunch. Its a formula supplement with out the vitamins and minerals. its mostly the added protein. It has 5 protein equivalents per package.

They came out with this product after having trouble with the restore liquids having gelatin particles and clumping in the bottles.  I was skeptical to try it, as i found the restore had an after taste and was such a large volume since id have to drink multiple ones plus my regular 4 bettermilk. However I am so glad I did!

At first glance it reminded me of the kool aide packages for kids that have the crystals you add to water.

Cambrooke and Stephanie sent me a few samples to try at home. They arrived on Thursday and I got a chance to try them yesterday.

I tried the berry yesterday and it tasted like a light juice or flavored water. It was refreshing and so easy. I just added it to my water bottle and took it on the go with me in my car while maddie and I ran errands.

It did not separate and was not chalky or clumpy. No after taste either.

So I thought id share some photos today while I sample the orange!

 

First I found a shaker cup since I found yesterday stirring vigorously Didn’t make it dissolve well enough: 2017-04-22 10.51.16

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Then give it a good shake , it will get frothy on top but keep shaking. Then let it settle and clear.

 

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Getting clearer :

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Look at that , no chunks or froth ! looks just like juice and thin as water.

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Time to drink:

 

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ah refreshing and ice cold ! I cant believe its formula!!!!

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I can totally see myself doing this once or twice a day with my water. I defiently cannot drink all my formula like this add it be way way to  much. I need around 45 grams of phe free protein a day. My bettermilk gives me 30 grams.  Each one of these restore powders is 5 but they do have ones that come as 10 i think.  So doing this twice a day is totally doable. I love how small the packages are. They fit in my purse, Madelyn’s diaper bag, my car and my back pack so I always have them with me. I think I even have one in madelyns stroller for when  I am on a walk !

I totally do not drink enough water on a daily basis and am always dehydrated and thirsty before bed time. So this will really help me up my water intake too!

All in all I am impressed and happy to find something that will fit into my routine with out to much adjusting or trouble.

if this interests you , I really recommend checking it out! Could be great for those on the go and active high energy days, for the sporty kids , to take to school, to work , or after the gym!

Jamberry Nails Fundraiser for CanPKU CAMP MAGNIPHEQUE!


It is my pleasure to announce the Jamberry nails fundraiser for CanPKU ‘s

“CAMP MAGNIPHEQUE!”

My Cousin and dear friend Tyra is a jamberry nails consultant and she will be hosting an online fb event fundraiser From January 7th to January 14th . Tyra will be donating her commission  from the sales at the event  to Canadian PKU And allied disorders INC for our first Canadian PKU Camp

“CAMP MAGNIPHEQUE!”

http://canpku.org/canadian-pku-camp

 

For those who are not familiar with Jamberry nails it is nail and hand care products that are salon quality and five free. Their main product is vinyl nail wraps, but there is so much more. If you want to check out the website it is tyraschalles.jamberry.com  ( Please wait for the event page to place an order)

How it works :

On Saturday January 7th Tyra will create a public event page on facebook and I will share the link on my blog and various PKU fb groups. You must join the event page and any order you place with tyra through the event between jan 7th and jan 14th goes towards the fundraiser.

In honor of the fundraiser, Tyra has also custom designed a special nail wrap specifically for PKU.  This wrap is only available during this event .  The wrap is in honor of CanPKU and features our Canadian PKU colours, ribbon and  the wording “PKU” !  This wrap as well as those available in the brochure and link above are all available for purchase and count towards the fundraiser.

Here is a sneak peak!

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This fundraiser is only open to Canada , America , UK , Australia. Mexico and New Zealand Residents only.

Please be sure to look for the event link when I post it on Saturday and join our event. Please share with your friends and family.  Tyra and I look forward to joining you and raising funds for our camp!

 

Goodbye 2016, Hello 2017.


Post originally written Dec 31st 2016 at 830pm

As I sit here surrounded by my little family , my baby an fur babies and the love of my life , in the home we have made …i reflect on one hell of a year.

2016 was one of the best of my life. Certainlly the most memorable. Many are looking back and seeing so much negative I can’t help but feel truly blessed. Filled with love and life. Of happiness , of gratitude and good health. All the things I wish for everyone this year and next and all the years ahead of us.

I reflect this new years eve as 2017 approaches and count my many blessings.

This year brought me my daughter. All my dreams came true the moment I saw her for the first time. I created life , carried and nurtured it. Something I never thought I’d do. I started this year pregnant and feeling my precious baby roll and kick and grow strong and healthy. Then had an beautiful birth experience . Intimate and supported by life partner cole and our wonderful team.

From that moment life changed and we entered into parenthood. Navigating a whole new world.

2016 has been filled with new milestones and so many firsts. From first cuddles , first feedings , first smiles , first roll over , first words, first crawl , first sitting up, first foods , first steps , first holidays and road trips , first Halloween an Christmas. I sit here now with a walking and talking almost 10 month old perfectly healthy beautiful baby girl.

This year was spent navigating and learning about each other. Finding out what kind of parents we are , what works and what dosent. Facing challenges together like struggling with breatfeeding . To accepting change and plans not always working out , learning to adapt as you go. To doing things you never thought you would but knowing they work best for us like Co sleeping and bed sharing.

Knowing what works for some dosent work for all. Every baby is different and so is each parent. Finding our own style and learning about who we are as a family. standing tall when others don’t agree. Standing up for our beliefs . Supporting and giving support. To building our village. Being a part of a community.

We made many new friends and lost a few along the way.

We celebrated birthdays my 30th and our 11 year anniversary. We welcome new additions to our friends families and our own with the birth of our baby nephew.

Cole broke his leg shortly after Madelyns birth and it was a long recovery.

I started my new silicone teething accessories business in September .

Now as one year ends and another begins , my maternity benifits end in a few short days even though I’m not expected back to work till march and I’m confident in my decision to not return at all. I renewed my practical nursing license as non practicing so I can stay home with madelyn as well as start my own day care. I firmly believe these early years are so crucial and I need to be here. I look foward to this new adventure and many others in 2017.

I look foward to growing and learning more about myself as a person and a mother. To learning more about madelyn and teaching her and experiencing life with her and cole.

I look foward to new chapters in life , new adventures , experiences , continuing relationships and exploring new oppertunities as they present themselves.

So as I sit here with my family snuggled up watching a movie waiting to ring in the new year I wish you all a blesseded happy new year and may 2017 be everything you deserve.

I’ll be cuddled in bed sound asleep by midnight as babies don’t wait for midnight and still wake up at 5 am. I wouldn’t have it any other way.

Good night and goodbye to 2016♡

 

 

Camp MagniPHEque


Looking for Christmas/ Hanukkah present ideas? Just in time for the holidays, registration is now open for Canadian PKU and Allied Disorders’ first-ever PKU camp called “Camp MagniPHEque”- for those with, as well as those affected by, PKU. The camp is for children, teens, families and adults.
 
Registration is on a first come first serve basis and spaces are limited. Early Bird prices in effect until February 28.
 
The 2017 camp will run from Friday September 22 through Sunday, September 24.
 
Hope to see you all at the opening of Camp MagniPHEque on Friday, September 22, 2017.
 

3 Different Diets + 1 Family = Learning Curve.


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.

Kids today.


Though I am very happy to see how far treatment and quality of life for PKU has improved over the years , even just in my short 30 years  .

Then there is another part of me is jealous of PKU Kids today.  So much is geared to ward todays children.  Parents are much more involved and advocating to make sure they do not miss out and lead a normal life and have a good relationship with food and a healthy life style.

There is a much greater sense of community , thanks to social media. There are more resources for support and families are connecting more.

I did not meet anyone else with PKU until I was 13.

Today youth can log onto fb and look for recipes, share meal ideas and photos, take part in discussions, ask questions, seek advice and connect with people there age. Parents and caregivers can join groups and have the same resources available to them.

There has been advancements with tools for tracking diet like How much phe and apps.

Families are coming together to socialize and hosting events.

Even the foods have improved.  We have so many more choices and imitations of regular foods that kids dont have to feel left out eating anything different from there family and peers.

You want a cheeseburger like the rest of your friends? Here is a camburger and dayia cheese? Want to roast hotdogs while camping with family? Here are brooklyn dogs? Pizza? icecream? pancakes and waffles? bagels and pasta?

Lets not forget the formula? Chocolate, strawberry, vanilla, orange, tangerine, swirl, GMP protein. Powders, liquids, pre made mixes, bars, sachets, gels, shakes, puddings! Various brands and low protein companies. Variety ! Why not mix it up and have 2 different ones?

We have choice now!

Choices I did not have . Choices I missed out on. That I feel if I had of had from an early age I never would have cheated on my diet! I never would have hid my food from my peers, or thrown it in the garage when I got to school.  I may never have had levels above 12 . I would be saved from high level symptoms and hospitalizations.

Kids today dont need to face the battles I did. They wont feel different or left out.

So when I am at events and I hear parents lobbying to the government for more advancements such as kuvan so they have the quality of life they deserve , I stand in support but I also think.. What about the adults?

How do we achieve the quality of life we deserve when many of us have already learnt these bad habits, have a bad relationship with food? struggle with compliance?  when we are not use to some of the low protein foods because we didn’t have them so we developed a taste for ” regular foods” ? How do you make yourself eat the low protein rice that might as well be pasta made in the shapes of grains when you have the taste and experience of real rice?

Or what about the adults who have no aces to low protein foods, because they have either aged out of the government funding, or they have no private insurance?

My heart aches for the adults like me who ride the roller coaster of com pliancy. Who are stuck on the merry go round of high level symptoms or battle with side effects such as eating disorders or mental health issues developed by not staying on diet?

This is why I decided 8 years ago to dedicate my life and my voice to being an advocate for the adults. Sometimes its very frustrating being the only one up trying to get the attention we need.  In my experiance so many adults have shyed away from anything to do with the diet.  Its like pulling teeth to get them to part take in social events, come out to seminars, partake in the community.  Try new low protein foods and recipes and find there way back and value their health.

I see adults blame everything wrong in their life on their high levels from relationships to work and jobs and any failure and I get frustrated , and want to scream come to the events, get involved and be inspired and get back on diet.  It is so much easier now.

Or when a maternal PKU mom only returns to diet long enough to have her baby then goes right back off again because the temptation of a real cheese burger or meat is to alluring. She is not use to the textures and tastes of the imitation low protein options. Or insurance wont cover her now that shes had her baby. I fear for her and the impact that bad levels will be on her to parent.

My thoughts always go back to if only they had the opportunities kids today have.  If only we had all these options and choices as kids , we would be repping the benefits now. The next generations will learn from us and it will continue to improve.

Being born today with PKU is not a curse.  Today is a great time to have PKU and it will only get better.

In the mean time… how do we help the adults?  How can we bring them back on track? and improve their quality of life too?  I want to hear from you ! Please write me at my email or leave a comment to have your answer featured on a part 2 blog post.