Click the above link to listen to me read this poem and hear my take-away from it as well.
I am so sorry I have been MIA. Pregnancy was not my friend and in April we welcomed our second son, Weston, and we have just been trying to adjust to our new family of four. It has been a great change for us but definitely a busy last couple of months. Boston absolutely ADORES his little brother, Wes. It’s the sweetest thing to witness.
Cody and I recently returned from the National PKU Alliance Conference in Atlanta, Georgia. It was truly amazing, if you ever get the chance to attend one- you must! It is good for your soul.
I wanted to update those of you who couldn’t attend on some really great things happening in our PKU world and just a few things that we learned while we were there.
- A cure is on the horizon. I feel it in my bones and I could not be more excited. Homology is currently working on gene editing (taking the damaged PAH enzyme –altering it to work- and returning back.) They recently did a trial in mice and it has shown to be extremely successful and they will start human trials in 2019. WHAT A MIRACLE!
- Treatments for PKU are increasing. 10 years ago before the NPKUA was founded there were maybe 2 pharmaceutical companies working on a treatment for PKU. Now there are over 20! We learned more about Pegivalase (previously known as Peg-pal), Liver stem cell therapy, Kuvan, probiotic therapies and many other different treatment options in the works. Pharmaceutical companies for years didn’t put a lot of effort into treatments for PKU because it was manageable through diet. STILLà not an acceptable way of life.
- I’ve learned that living with PKU from the outside eye looks much easier than what it actually is. Which is true. People think its just a vegetarian diet or gluten-free diet. They never really understand the full extent of weighing and counting everything they eat. I knew a couple (The Parkers) from my hometown that had two children with PKU (small world because it is so rare) and they made it seem effortless to everyone around them. Which is great—they did their job as parents to make their kids feel as “normal” as possible. I never really knew the extent of how HARD it truly was, until I found myself with a child with PKU. We try to do the exact same thing for Boston—we make people aware, but try to make it seem effortless at play dates, birthdays, and dinner with friends. It’s just not as easy as we make it seem. Which is why all these advancement are a HUGE celebration for us in the PKU community. Everyone is deserving of a treatment or a cure.
- The power of empowering our children with PKU and not enabling. This is huge for me because I often worry I’m either too hard on Boston or I baby him too much. Truth is he may have trouble have with executive function due to PKU but that doesn’t give him an excuse and he should be treated the same as every other kid in daycare/school. We learned how to help navigate Boston in a positive direction. (I’m happy to share more information in regards to this topic with anyone else who is interested.)
- “Formula”- NO more. We are getting away from calling Boston’s PKU Formula…”Formula” (he’s almost three and we decided to go with something that will transition to childhood and adulthood more easily. We call it “Muscle Milk” (feel free to use as well) because essentially it is his protein shake. My husband takes one while working out to increase his protein intake and Boston does the same daily (minus the phenylalanine in his.)
- We learned how important it is to be involved. It is so important to KNOW people, to be connected, to be an advocate for your child. Whether that is doing fundraisers, being involved in state foundations, or just connecting with people through social media. IT IS KEY to have friends that also experience the same struggles and triumphs, as you do. Amy Oliver said it best when she said “Its like the best day ever when you finally find the Follow Your Heart Mozzarella Cheese that your child absolutely loves at such and such place.” Anyone with a child with PKU understands the struggle. Boston loves the Strawberry So Delicious ice cream and right now I cant find it. They day I do find it I will share it with all my PKU friends because they just get it. My best friend and my co-workers wouldn’t get what a HUGE deal that is for me—but they will. We recently successfully transitioned Boston from a bottle to a sippy for his “muscle milk.” This is HUGE in our world but most of my friends transitioned with their kids at 1 year. So they don’t get it what a huge hurdle that was for us. We’ve had to deal with our health insurance company denying Boston of his formula since my husband’s health insurance is out of Oklahoma…STRESSFUL. But we’ve had many of our PKU friends in different states come to our rescue to try and help us. CONNECTION IS ESSENTIAL!
The conference was truly amazing! It was educational and fun! I can’t tell you enough how great it was to connect with some of our friends through social media in person at the conference and to also meet new friends. We definitely plan on attending again. I hope this blog helps many of you feel updated on what is happening in our world that couldn’t attend.
We feel infinitely blessed.
There is nothing more rewarding or exhausting than becoming a parent. You never stop worrying about the well being of your family.
After Boston was diagnosed with PKU the thought of having another child was hard; I struggled with guilt since it is a genetic disease. I battled with the decision of adding more children to our family due to the 25% chance that our next child would have PKU.
I’ll be totally honest for a while it was a HARD NO for me. I was scared and afraid our next child would blame us if they were diagnosed with PKU. Not to mention besides the PKU our first few months were pretty traumatic with Boston and I was just downright scared to have another child.
Don’t get me wrong Boston having PKU is not the worst thing in the world. He gets the EXACT amount of protein he needs each day. He is measuring and weighing off the charts. He is extremely healthy and this life has become our new normal.
BUT now that we know we are carriers for PKU, Do we take the risk?
It was never our intention when we started our family to have one child. I am not knocking those who choose that by any means, that just wasn’t our plan for our family. If my husband had it his way we would have 5, but I settled for 2-3 depending on genders. Ha!
After a couple of months I decided that maybe adding another child to our family wouldn’t be that bad. We met lots of other families who had 1 out of 3 kids with PKU and 2 out of 2 kids with PKU. It would either be a PKU buddy for life for Boston or teach him that he eats a little differently before he went to school; either way we were at peace.
Well, God always has his own plan in store and we recently found out we are expecting baby #2. We are so excited to be adding another bundle of joy to our family. We are due spring of 2018.
My husband and I decided to have a test performed to see if the baby had PKU.
The test we chose to have done is Chorionic villus sampling.
You can click here to know more about the procedure, risks, and what it tests for.
I thought the procedure was painful but tolerable. Its not something I would sign up to do for fun, lets just say that.
I am grateful that I had a doctor who performs these every other day, so he’s very good. We used Dr. Weiss in Dallas and we were very happy with him and his staff and my results were back within 2 weeks.
Do you have to have genetic testing done? Absolutely not!
We chose to do it because so many things were out of our control when Boston was born that we felt it would help to alleviate stress; regardless of what the test showed we would never terminate, we just wanted to know. Boston was rushed for emergency surgery at 23 hrs. old (we didn’t know he had PKU at the time) and he was given packed protein following surgery to help him heal. Had we known in advance he had PKU he wouldn’t have been given that and his levels would have been much different in that first week.
When we did our CVS test we also found out Baby Barrett #2s Gender.
It’s a …
And he doesn’t have PKU.
I think regardless of the results I was going to feel indifferent. I was sad Boston wasn’t getting a PKU buddy for life (someone to understand his diet and go through the same struggles with him) and relieved that I didn’t have to count everything this next baby ate. Either way the results went I was going to feel indifferent but I’m glad we did it.
I hope this helps another family struggling with the decision to add another child to their family and hopefully our experience will help someone else to be more knowledgeable about testing, if that is what they desire.
When your handed a certain situation in life, I feel like you have three ways to handle it.
- Let it define you
- Let it destroy you
- Let it strengthen you
I am so grateful to have this guest blogger, Tyler Richardson, tell us a little about him and answer questions regarding his journey with PKU. This is so helpful to any new parent with a newly diagnosed baby with PKU because this gives you a look into someone’s life that chose to make what to many think is a “bad” situation into a blessing and allowed it to strengthen him. Tyler, you are an absolute pleasure to know, let me re-phrase that you are an HONOR to know. You have uplifted me in times when I was worried about our diagnosis with Boston and I am so grateful to have you in our lives so that Boston has an amazing person/Christian to look up to in the future. Below you will find a series of questions I asked Tyler and he so graciously answered.
First off tell us a little about yourself.
My name is Tyler Richardson. I’m 29 years old. I am married to the love of my life, Alyssa Richardson. God has blessed us with one little girl, her name is Evelyn, and she is the absolute most beautiful thing you will ever see. (Yes, I’m a proud daddy)
I love being outdoors, whether I’m mountain biking, hiking, backpacking, camping, fishing, hunting… you name it. The mountains are where my heart is and where I feel closest to my Creator. I’m passionate about my faith, love my friends and family, enjoy helping others and enjoy competing in pretty much anything athletic.
- Did you ever felt isolated (left out) due to your diet?
For the most part, no. Sure, when you’re first going to a new school or something, everything is a little weird as you find where you fit in, but people are always understanding. Being confident in the way God made you is a good thing and PKU doesn’t hinder you from being able to participate in any activities or anything your friends might be doing… unless it’s a chicken eating contest or something, haha!
- Did you ever find it difficult to travel with your friends?
I have never had issues with traveling. I just always pack my formula FIRST! You can buy clothes when you get there, can’t buy anything PKU specific though… Walmart doesn’t carry that!!!
- Have you ever flown? (If so how was that taking your special low protein food and formula?)
I have. I’ve flown all around the US and even Internationally and have never had a problem traveling with formula as long as it’s in sealed containers I’ve taking with me. In the last several years I have switched from PhenylFree products to Cambrook foods Bettermilk and it comes in individual packets which makes it much easier. They are all labeled sufficiently as well. I have never traveled with any special low protein foods, so I can’t speak to that.
- Did you ever not like your formula?
Never. Since I’ve been in a habit of drinking it 3 times a day for 29 years now… it’s a part of my life. Sure it tastes different when you switch, but it’s about how you feel, not the taste. I focus on how it makes me feel and created a habit a long time ago, same time every day and before long it wasn’t an issue at all.
- Do you feel like you’re healthier?
ABSOLUTELY! Because of the restrictions of PKU, I am forced to eat more vegetables and fruits than most people. So, although PKU patients can’t eat meat and other things, I have always been very healthy because of all the nutrients I get from fruits and vegetables, and especially from my formula.
- Did PKU hold you back from doing things you wanted (sports, etc.)
PKU has NEVER held me back from anything sports related. I played baseball at multiple levels throughout my life, as well as any other sport I could get my hands on, and was never hindered in any way in regards to sports. The only challenge that took some hard work was getting into weight lifting and finding out how to properly fuel my body to be able to build muscle. Once I did my homework on my formula and found out how I needed to fuel my body, it wasn’t a problem at all. Now that I am no longer in the sports I played as a child I still compete regularly in a few areas. I race mountain bikes competitively and also do CrossFit and have done several competitions in that as well.
- Did you ever try to go off diet? (If you did, how did it make you feel?)
I have never had a desire to go off diet. I have eaten one dish in my entire life that was more protein than I needed to consume (which was a mistake, not intentional) and the feeling that gave me is not worth having ever again. I ate a dish that had tofu in it (which I thought was cubed mushrooms covered in a sauce) and an hour or so after eating I was sluggish, felt terrible, had a very foggy feeling in my head and had absolutely no energy. It was terrible.
- Can you tell when your levels are high? (If so how would you describe it?)
I can. I have always paid attention to what I ate, so when my levels got high, I could feel it and could usually pinpoint it to a stretch of meals I ate. The feeling is much like what I described above, foggy feeling in my head (cloudy mind) sluggish, low energy.
I have also found that in the active seasons of my life (baseball season when I was younger, etc) my levels were lower than the other times of the year. Through the years I have been able to confirm that my activity level does correlate with my levels, since I eat fairly similar all the time. The more active I am, the better my levels are.
- Did you have any siblings with PKU?
Yes, my younger brother has PKU as well. I am 29 and he is 23.
- Did you have any siblings without PKU?
- What do you eat when you go out and eat?
A lot of vegetables. Pretty much meals without meat or other protein sources.
For example, going to Mexican restaurants, some of them have Veggie enchiladas. I get those with no cheese and just rice, no beans. So it’s really just a tortilla, veggies inside, enchilada sauce and rice.
I do have a milder case of PKU than some do, so I am able to have a little more freedom when going out to eat and don’t have to restrict to only low-Phe foods.
- What were your favorite foods as a kid?
As a kid I was always really fond of french fries, green bean casserole and tomato soup… and I still enjoy those today.
- What are your favorite foods now?
I am a sucker for chips and salsa. But other than that, veggie enchiladas, pastas with veggie/tomato based sauces and there is a place here in town that makes veggie burgers out of finely cut veggies and a little brown rice, no beans or any higher protein stuff… I LOVE those.
- Was your diet hard to explain to friends and teachers?
I never really struggled explaining it. Just explained that my body can’t process high protein sources like meat, eggs, nuts, etc.
- Was your diet hard to explain to your significant other & their family?
No, they took to the change pretty quickly. When I met my wife, she caught on pretty much on our first date, her parents didn’t take long after that and they always made sure I had things to eat. They eat a lot more vegetables now too haha.
- Have you ever tried kuvan (if so what was your body’s response, did it show a big change or little change?)
I have not, but would be open to trying it to be able to help out others and see the changes. I don’t really have interest in changing my diet. I like the way I eat and live.
- What were birthday parties like for you? (Was it hard to not eat cake?)
Birthday parties were never really a struggle for me. My mother had a low protein cake recipe that, to this day, I still like better than regular cake! My brother would agree with me on that one as well.
- What were your favorite holiday foods?
Green bean casserole
- What was the worst thing about PKU?
The people who don’t understand what “I can’t eat meat” means. Then they ask, “but what about fish?” no that’s meat too… “chicken?” no, that’s meat too. “but what about chicken FINGERS?” (yes I’ve actually been asked this…) No, that’s meat too…
- What was the best thing about PKU?
Being able to take something that people view as a set back and PROVE THEM WRONG!
YES I’m healthy. YES I do get enough food. YES I made good grades in school, I made the President’s List in college and have a master’s degree. YES I get enough protein. YES I can build muscle. YES I can be competitive in sports in spite of my diet that most people think hinders me athletically.
People think that because someone has PKU, they can’t do things other people can do. WRONG.
Part of the reason I love doing the things I do athletically is to show others who have PKU or have kids with PKU, that life can be normal even though at the beginning it is very scary and very different.
- Had your diet ever been a struggle financially?
As a kid, insurance wasn’t as good as the insurance I am blessed to have now, so it was a struggle. I am happy to say that my wife and I do not struggle financially because of it. If I didn’t have the insurance I have, it would be a struggle though. I’m blessed to work for a company that provides great benefits.
- What kept you from deviating from your diet?
Really just the way eating right makes me feel. When you eat in a way that is “on diet” you eat very healthy, lots of fruits and veggies, no high protein foods that cloud your mind and make you feel groggy, and you really do notice a difference. Even for someone without PKU, eating all of the fruits and veggies would make a huge difference. If I have it so good already, why would I change?! God made me this way for a reason!
Thank you Tyler for taking your time to do this. I hope this comforts a terrified mom and a dad searching for answers for their new baby’s diagnosis of PKU. What a blessing this PKU community truly is. Thank you Tyler for not letting this disease DEFINE YOU nor DESTROY YOU.
Cody and I are driving to Ft. Worth to take Boston to his routine checkup with his Metabolic Doctor, Dr. Alice Basinger, and his Dietician, Lanie Coffey, and I thought I haven’t updated y’all on life with Boston lately.
- Boston was eating great and then all of a sudden he hated food, now we are back to loving food. (Ugh, if he only knew how hard this made life for us) ha!
- He has an attitude
- He is jabbering away
- He is running everywhere; including into walls.
- He is giving hugs
So you know, just your typical 17-month-old things…sweet one minute and then a Tasmanian devil the next.
I wouldn’t trade it for the world!
I wanted to do a blog on grocery shopping because when Boston was first diagnosed with PKU and I went grocery shopping for the first time, I cried. It was BEYOND overwhelming! Here I was in a place full of food and my kid couldn’t eat any of it.
I was just looking in all the wrong places.
So let me help you!
- The gluten free isle is your new best friend. I buy the majority of his snacks there.
(Here is pic of some of his favorites)
- SO DELICIOUS products are literally delicious; they make coconut milk, ice cream, yogurt, all things PKU peeps can have. (See your How Much Phe app) –> If you don’t have this, you need this…it is life changing.
- Can food isle is my second best friend. No judgment. I’m a working mom and I do the best that I can. The Good Lord knows I’m not a cook, but I try. But during the week for lunches and dinner we do a lot of (sliced potatoes, corn, green beans, carrots, mushrooms, pears, blueberries.) I’m the worst at going to the store so whatever takes longer to expire; I’m all about it.
- The fresh produce area. I truly love this isle because I feel like I have free range. It’s like a playground of food for Boston. We love our fruits and Veggies! I did want to tell you that cauliflower crumbles are a HUGE hit in our house. I just sauté them in a pan with olive oil, and he loves it.
- I buy a lot of things from Cambrooke and PKU Perspectives. We get our main meals from there such as (Mac and cheese, Spaghetti, corny dogs, veggie nuggets, etc.)
When we go out and eat we pretty much stick to baked potatoes, green beans, corn, fries or whatever we bring from home. You have to be careful when eating out because they make a lot of things in butter.
I know we feel like there are a lot of things our PKU loved ones cant eat but really I feel blessed to live in a time where there are SO MANY options for them.
I hope this helps restore some hope in you again if you are dreading the grocery store.
Just a reminder because everyone reading this needs to hear it:
Your doing a great job, this adjustment is hard, and just when you think you have your toddler figured out they will change again…just remember this too shall pass.
Best advice I ever got was God equipped YOU to be this baby’s momma, no one else, YOU. He entrusted you with this precious gift. Thank you Amy Bunch for that.
Now I want to share that great piece of advice with you!
We have now arrived home from Ft. Worth and Boston had a successful checkup, he is developing right on track. Praise the Lord! We celebrated with a day at the Zoo and we all had a blast, everything was “dis, dis.”
Do you ever look around at all the other kids doing things and think why isn’t my kid? I’ve decided that whether you have a PKU kid or not, comparison is inevitable.
Why wont my kid drink out of a sippy cup?
Why isn’t my kid walking yet?
Why doesn’t my kid say that word?
Should my kid be off baby food by now?
All the million questions that surround every Mom and Dad at some point, but I feel we (PKU caretakers) overanalyze day in and day out.
Well I am here to put some of you other PKU Mom and Dads at ease:
- Boston is 15 months & just recently walked at 14 months.
- He still drinks his formula out of a bottle.
- He pretty much HATES his sippy cup.
- He eats a lot of the same things everyday.
- I just recently took baby food away from Boston because I had a hard time getting in his phe without it.
THE STUGGLE IS REAL!
When we are at restaurants I feel like people are looking at us like, why is that toddler still on a bottle??
“STOP JUDGING ME, IM DOING MY BEST!”
I’ve talked to lots of other PKU friends who have dealt with these same issues. SO I am here to reassure you that our kiddos will grow up to be perfectly healthy, so who cares if he/she is 4 and still drinking their formula from a bottle—at least they are drinking it. Which is the most important thing for our sweet babes.
We can’t be so hard on ourselves as parents; I mean after all we still have teenage years ahead. 😉
I wanted to share what Boston currently eats so it may help you as you are preparing your toddlers meals.
- Sautéed mushrooms
- Sautéed zucchini and squash
- Green beans
- French fries
- Tater tots
- Mashed potatoes
- Sweet potatoes
- Vegan egg
- Pears (fruit cups)
- Peaches (fruit cups)
*We try a lot of fruits, but his diet is so bland that he sometimes finds them too sweet. He will love them one day!*
- Lil crunchies
- Grabber (fruits)
- Honey graham crackers
- Gluten free pretzels
- Veggie straws
- Dried fruits
These are just a few things we LOVE at the current moment, so I thought I would share it with you!
Best of luck through the toddler trials…
I know I have been MIA for a while I was working extra hard to get PKU STRONG and BOSTON STRONG #pkuawareness shirts made for our sweet babes. Of course you can still purchase them through Dec. 30th. Here is the link:
Thanksgiving is one of my favorite holiday because I think there is nothing more valuable than time spent with your family; to just sit still and be grateful for all of life’s blessings, and of course to eat. 😉 This holiday season I find myself being extra thankful.
- Thankful for newborn screening
- Thankful for a formula that allows my little one to live a “normal” life
- Thankful for how much phe app
- Thankful for low protein foods
- Thankful for Cook for Love
- Thankful for social media and its outlets with PKU
- Thankful for our dietician & metabolic doctor
- Thankful for our pediatrician
- Thankful for my family’s health
- Thankful for this blog
- Thankful for my precious PKU boy
When Boston was first diagnosed with PKU I dreaded the thought of Thanksgiving.
I was afraid that a holiday centered around food would become my biggest nightmare and his greatest disappointment. I’m not a cook. My husband and I basically live off frozen foods and eating out. So the thought that I would have to go out of my way to prepare a meal for him scared me.
Now granted he is only 14 months old so regardless he wouldn’t eat much but I still wanted to make him feel included on this special day.
So for his thanksgiving meal I made the cook for love recipe: mashed potatoes, for everyone. It was trial and error –I think it definitely helps to have russet potatoes like the recipe calls for. It was a little different for everyone else but he LOVED them. MOM WIN!
My takeaway for all you parents who also struggle with cooking is “try and fail, don’t fail to try.” Make this holiday just as special for them as it is to us. The thought is what matters most. Never give up on trying new things for your PKU kiddo. One day you will get it right and it will feel like you hit the lotto.
Go to cookforlove.org to register for all kids of wonderful recipes! I know I saw some people talking about an amazing hot chocolate recipe. Cant’ wait to make it for Boston one day.
Happy Holidays, Love the Barretts!
Halloween is approaching so I wanted to do a blog in regards to Halloween candy. Boston obviously will not be eating any of this fun stuff this year, but I knew y’alls kiddos might, so I wanted to have this available for you. I will print this and take this with us when we trick-or-treat so if he wants to eat anything right away, I know what to grab out of his bucket. I also listed not phe friendly items just in case your kid accidentally eats some of the “no-no” items.
Phe-riendly Candy (Phe free Candy & Low phe Candy)
Sour patch kids 0 mg of phe
Laffy Taffy 0 mg of phe
Sweet Tarts 0 mg of phe
Gobstopper 0 mg of phe
Ring Pop 0 mg of phe
Mike & Ike 0 mg of phe
Sour Punch Straws 0 mg of phe
Dum Dums 0 mg of phe
Pez 0 mg of phe
Spree (Hard Candy) 0 mg of phe
Jolly Rancher (Hard Candy) 0 mg of phe
Nerds 0 mg of phe
Smarties 0 mg of phe
Dots 0 mg of phe
Fruit Gushers 1 packet = 5 mg of phe
Peeps 1 piece = 4 mg of phe
Skittles 1 full size pkg. (61 g) = 9 mg of phe
Starburst 1 full size pkg. (59 g) = 8 mg of phe
Jelly Beans 14 Pieces = 5 mg of phe
Tootsie roll (midgee) 1 midgee roll = 2 mg of phe
Tootsie roll (small size) 1 roll = 3 mg of phe
Twizzler (Bites) Bites pkg. = 4 mg of phe
Spree (Chewy) 8 pieces = 6 mg of phe
Candy Corn 13 pieces = 3 mg of phe
Not Phe-riendly Candy
Jolly rancher (Gummies) 9 pieces = 48 mg of phe
Twizzler 1 licorice = 19 mg of phe
Milk Duds 13 pieces = 45 mg of phe
Sugar Babies (Regular size box) 1 box= 21 mg of phe
Sugar Babies (Fun size) 1 box = 12 mg of phe
Almond Joy (Fun Size) 1 bar = 42 mg of phe
Whoppers 1 box (77g)= 125 mg of phe
Hershey’s (Miniature Milk Chocolate) 1 pkg. = 40 mg of phe
Hershey’s (Kiss) 1 kiss = 16 mg of phe
Butterfinger (Regular Size) 1 bar = 206 mg of phe
Butterfinger (Fun Size) 1 bar = 73 mg of phe
M&Ms 10 pieces = 22 mg of phe
Twix 1 bar = 66 mg of phe
Three Musketeers (Fun size) 1 bar = 29 mg of phe
Three Musketeers (Regular size) 1 bar = 106 mg of phe
Snickers (Fun Size) 1 bar = 82 mg of phe
Snickers (Regular Size) 1 bar = 241 mg of phe
Reese’s (Miniature) 1 piece = 43 mg of phe
Reese’s (Regular Cup) 1 piece = 104 mg of phe
Kit Kat 1 piece = 135 mg of phe
We hope y’all have an amazing Halloween!
“You can make plans, but the Lords purpose will prevail.” Proverbs 19:21
I’m a planner, a little OCD, and total Type A personality.
It’s a blessing and a curse.
When I was pregnant with Boston, I wanted to prepare myself for everything. I bought all kinds of medicine, books, had all the newest and greatest technology, I was overly prepared for this baby.
But then he arrived and everything wasn’t peachy.
Everything wasn’t perfect like I imagined.
He suffered a rectal perforation at birth from a rectal thermometer. He was then rushed for emergency surgery at 23 hrs. old. He then had a colostomy bag for 2 months. AND just when I thought we were going home from that horrible ordeal we got a call about Boston’s PKU test being abnormal.
Angry is an understatement.
Faith shaken is an understatement.
Emotionally unstable is an understatement.
I thought to myself how could all of this happen to us when all of my friends are having their babies and taking them home?
I had planned to bring my baby home in about 3 days.
I had planned to have a perfectly healthy baby with no visible scar.
I had planned to have a baby that could eat whatever he wanted.
SO when my plan in my mind wasn’t what God had in store for me. I struggled.
Everyday I ate something that I knew Boston couldn’t eat and I felt helpless.
Boston’s PKU made me not want to eat, I felt guilty eating things I knew he never could.
Everyday my husband came home from work and I was crying about how unfair this was to be happening to us…I had changed a colostomy bag twice because poop was leaking all over the place. I was afraid to leave the house with him because it would be a poop frenzy. Then I was struggling with his PKU diagnosis. That was probably the hardest.
The best thing I ever did was finding other PKU moms.
They gave me hope.
They gave me someone I could relate to.
That was God.
Boston is such a joy to be around.
Boston literally lights up the room with his smile and demeanor.
The outpouring of love and support from our friends and family.
That was God.
So maybe life wasn’t what I planned.
It’s SO MUCH better than I ever imagined.
That doesn’t mean for all you newly diagnosed moms that I am minimizing what you are going through because it’s hard and still is hard at times.
I just want to offer you hope and faith like other moms did for me.
Our babies are special and God handpicked us.
He called the equipped and he entrusted us to care for these PKU babes.
When I think of all the alternatives with Boston I feel really blessed. We could have brought him home from the hospital without knowing he had a rectal perforation and he would have died within 48 hrs. from sepsis.
If we had denied the newborn screening test we would have never known Boston had PKU and how to manage his diet and he would have suffered irreversible brain damage.
Take the time to witness Gods miraculous blessings, because while you are busy making plans you may miss your purpose; you might miss your calling.
“For I know the plans I have for you; plans to prosper you and not to harm you, plans to give you a hope and a future.” Jeremiah 29:11
Boston’s first birthday was a few weekends ago and it was such a great day celebrating this precious boy! A lot of the people who surrounded us on this special day were the people who guided, provided, and loved us through this year.
We had a pretty rough year, aside from Boston having PKU; he also had a rectal perforation at birth, and C.Diff. Whew! Overwhelming. I can honestly say he’s had a smile on his face through almost all of it; he’s a real trooper.
So I decided to throw an extravagant first birthday, I just felt like he deserved to be celebrated! So with that celebration came a BIRTHDAY CAKE! I wanted him to feel like every other kid on his or her birthday and give him a birthday smash cake. So I made the Cook for Love (yellow cake recipe.) I must say this cake is sooo DELICIOUS! Of course he didn’t really eat it…but hey “A” for effort. I definitely want this for my birthday this year!
Here is the recipe:
Author: Brenda Winiarski
- Yield: 24
- Serving size: 1 cupcake
- Phe Per Serving: 34 mg
- Calories Per Serving: 160 kcal
- Phe Per Recipe: 821 mg
- Calories Per Recipe: 3840 kcal
Prep time: 30 mins
Cook time: 30 mins
Total time: 1 hour
This cake is worth the effort. It took me over four years to get results that everyone in the family enjoys. I have even had requests at gatherings for the recipe – no one would know that it was made for a restricted diet – it is rich and buttery – better than Betty Crocker any day. If making cupcakes, they freeze beautifully so you are set for those unexpected parties at school.
- 325 gm (2½ cups) CFL baking mix [195 mg]
- 15 gm (1 tablespoon) baking powder [0 mg]
- 3 gm (1/2 teaspoon) salt [0 mg]
- 50 gm (1/2 small box) jell-o instant pudding, vanilla flavored [0 mg]
- 12 tablespoons (1½ sticks) unsalted butter, softened and cut into 12 pieces [72 mg]
- 1 cup granulated sugar [0 mg]
- 57 gm mixed egg (1 large), room temperature [388 mg]
- 17 gm (1 large yolk) egg yolk, room temperature [116 mg]
- 30 gm (2 tablespoons) mayo [23 mg]
- 2 teaspoons vanilla extract [0 mg]
- 300 gm (1¼ cup) rice milk, room temperature [27 mg]
- Grease two 9 inch baking pans with lots of butter and line with parchment paper that has also been greased. Preheat oven to 350 degrees.
- In a medium sized bowl, sift baking mix, baking powder, salt and pudding mix three times (or use a triple sifter once). Set aside.
- Cut butter into 1 inch pieces and put them in a large bowl. Soften with a mixer on low speed. Increase the speed to medium high and cream until light in color, about 1 ½ to 2 minutes. While still mixing, add sugar 1 tablespoon at a time, taking about 4 minutes to blend it well.
- Add egg yolk, blend for 30 seconds. Scrape bowl.
- Add mayo, blend for 30 seconds.
- Add mixed egg, again blending for 30 seconds. Add vanilla.
- With the mixer on low, add about half of the dry ingredients. When incorporated, add half of the rice milk. Then half of what is remaining of the dry, then the rest of the rice milk, ending with the remaining dry. In other words alternate between the dry and wet, starting and ending with the dry mix. Mix JUST until incorporated after each addition. Scrape the sides of the bowl as necessary.
Bake at 350 degrees, for 30-35 minutes for 9-inch cake, or until it begins to come away from the sides of the pan. Stick toothpick into the middle of the cake, it should come out clean. Bake for 18-20 minutes for cupcakes.
This was found at cookforlove.org (Be sure to register to find lots of great recipes!)
Cook for Love also has a facebook page so make sure to connect with them there. It’s such a great way to share recipes and all things PKU.
Here is a picture of all the ingredients I used:
I was blessed to have my sisters in town; my middle sister, who is a great cook, helped me make this delicious cake for Boston.
Hope y’all love this cake as much as I do!
Also here are some pics from his BIG DAY!
May our PKU babes always be brave, always stay strong….