FRANKIE’S MALIBU A PKU FAMILY ADVENTURE (BOOK RELEASE)

Hi everyone! I’m so excited to tell you my first children Ebook is now available on both IBOOKS and at BLURB.COM . You can download to any device, IPAD, KINDLE, etc. 

for IBOOKS – http://itunes.apple.com/us/book/id1209780039

for BLURB- http://www.blurb.com/ebooks/616123-frankie-s-malibu-a-pku-friendly-adventure

-This is why I haven’t been able to get my Blog’s out as quickly as I’d like to this past month. 

As many of you know, our daughter Frankie was diagnosed with an extremely rare metabolic disease known as PKU. Her body doesn’t process protein. As a Mother and a writer, I searched for children’s book options for Metabolic Diseases and to my surprise there were slim to none. 

I was inspired to create something for these children, their families, and friends, that they could connect to. 

I want to inspire children like Frankie, to seek adventure in this amazing world, and to never let their personal struggles stand in their way of living life to the fullest. 

These books are full of unique learning tools for young minds. Between learning to read, identifying wildlife, using their imagination, nutritional information, and travel. 

Thank you to all of you for your continued love and support. I hope you love this first book as much as we do, and continue to support education on metabolic diseases in our communities. That we can all have open minds and open hearts to families with special dietary requests. 

LOVE TO YOU ALL-

KACIE FOOS

 

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To sleep, or not to sleep? That is the Question. Answer: “Bitches Brew”

Wow, the lack of sleep is unreal. I know people warn you about it when you get pregnant. But man oh man, eleven months later, and… no, it hasn’t gotten better. Every night is a different story. 

So one of the reasons I haven’t been able to put blogs out faster is because I’ve just finished my first children’s book. I will reveal all at the end of week. It will be released first as an E-Book on amazon. I am absolutely thrilled about it. 

Lately though, Frankie has decided, if she is awake she needs me all of the time. No, I am not one of those parents that hovers over their child. Of course, I have her in my eye sight at all times, but I want her to be independent. But lately, she just wants Mommy to be next to her. Or if I’m editing on my computer, she is wrapped  around the bottom of my legs begging me to play. So I gave up on the idea of getting work done while she is in her playtime. 

So when she goes to bed, its adult time, where I pour myself a glass of wine. I do laundry, dishes, clean up, whatever, and then finally sit down and illustrate and write my children’s book. So I’m up  every night until midnight. 

So I am running on about five hours of sleep each day. No, it’s not healthy. Yes, this is the reality. My husband works crazy hours so he is little to no help on the sleep issue.

So Coffee, has become my best friend.”Bitches Brew” to be specific. 

Glass of wine at night, and a cup of Bitches Brew in the morning and I am good to go. Sort of. No, I am not making up the name. Thats what the coffee is called. The brand is called Groundwork. Go get some. It’s delicious, and the slap in the face you need in the morning. 

So yes, this blog isn’t supposed to be inspiring. It’s supposed to be a hug. I’m letting you know you aren’t the only tired person out in the world, trying to make it through their day, with a little bit of sanity. You are loved.

I’m giving you a hug and thoughtfully reminding you, I know. I KNOW HOW YOU FEEL. 

And trust me, “Bitches Brew” will get you through. Or at least help a little.  

Much Love. 

It’s a Small Big World

What a privilege it is to live in this incredible world. Sure there is a lot of crap that goes on but if you open your eyes to the world around us and the life we’ve been given. You might walk a little differently. A little perspective goes along way.

When our daughter was diagnosed with PKU we were terrified. No one understood what it felt like. We were walking this unknown path with a four day old baby. Everyone we reached out to had never heard of PKU. We were lost in a great big world.

We listened to our doctors, followed referrals and found ourselves at Children’s Hospital LA. I am not going to speak for that hospital in terms of other departments. I know they save families lives and do extraordinary things. But the Metabolic Department is practically nonexistent. I won’t go into the gritty details but we quickly transferred to UCLA and our quality of life was dramatically changed.

In the beginning all of our doctors were pushing us to join parent groups on places like Facebook, or meet up with other parents who have children with PKU. We simply weren’t ready. We felt pressured to open our house to strangers when all we wanted was to be able to find our own rhythm, and surround ourselves with family and friends.

Well here we are almost eleven months later. PKU is an extremely rare metabolic disease. I lean on God. I pray every day. Lately my prayer has been to bring a friend into my life that understands. I don’t know if you believe in God or not, but I will tell you this, if you do start believing, you won’t be so scared, and you won’t be lonely.

Well, I joined a couple groups on Facebook. Amazing communities of people. The world became a bit smaller for me. I could sympathize so much with those families. But here we are in Malibu and most of the families are spread out across the world.

Two months ago I was at my chiropractor and the front desk girl says to me, you won’t believe this, but another Mom who comes to see us has a daughter with PKU. My jaw dropped. I said, well maybe someday we will meet!

I left with this optimism thinking, there is another Mom like me that lives in my area who has a daughter with PKU?! And nerves crept in thinking. Oh no, I can’t force this to happen. She will think I’m weird for it. So I just put it in my prayers and said, I would really like to meet her if you can make that happen.

Well, two weeks ago I’m rushing out of my chiropractors office to get my doctor to her pediatrician. I’m checking out, and the receptionist says to me, “Kacie, this is _____,  this is the Mom I was telling you about.

I introduced myself right away. Frankie was in my arms, and pretty fussy because she wasn’t feeling well. We hit it off right away. I had an invitation to my daughters birthday with me that I handed to her and told her I would love to get coffee. Turns out her daughter is less than a month younger than Frankie. What are the chances?!!!!! Two girls day’s apart diagnosed with the same life long journey, and we live incredibly close to each other. Believe what you want to believe but PRAYERS WORK.

Tears built in her eyes as we spoke about our journey and I thought, wow, this woman knows. She knows this feeling of loneliness wondering our way through this crazy journey. Well, we’ve been texting and talking ever since. We are getting together today, and I just wanted to write this for anyone reading to let you know, you are NEVER ALONE.

I don’t know if you believe in God, but PRAYERS WORK. I mean it. If you struggle with loneliness, get out, meet people, explore. When you put what you want into the universe, it will happen for you. But you can’t sit at home and twiddle your thumbs and wait for the phone to ring. You have to get out and live. Put that stamp on the envelope and mail that letter! Apply to life. Buy that plane ticket. Ask that girl you always think about out to coffee. It’s just a coffee!!!!!! But maybe that coffee could change your quality of life forever.

You are stronger than you know! And I will say this one more time, YOU ARE NEVER ALONE.

Much love, and off I go to meet another Mother and her daughter that could possibly be a wonderful, life long,  friendship.

Cotton Candy Sunday

Frankie’s Birthday is coming up and her party is going to be the theme of COTTON CANDY. It is PKU friendly! Our cotton candy machine that I ordered arrived on Saturday. It’s been raining like crazy here in Malibu so we’ve all been stuck inside most days.

Yesterday Frankie and I sat on the couch and watched the rain falling outside. She loved it. She would put her hand against the glass and try to catch the rain as it dripped down the outside glass. It was adorable. 

So much excitement and curiosity about the world outside. If we each practiced as much enthusiasm about the world around us I think we would all be happy and counting our blessings on a daily basis. Have you stopped and looked up at a tree lately. I mean really? Stop for a moment when you are outside next and just stare at a tree. Yes, you might look a little silly, but the more you look the more amazing it is. I mean it started from a tiny seed? 

Anyway, this past year I am thankful. Every day is an exciting challenge met with endless smiles from this little kiddo. Well, if you’ve been watching the news, our area has been kind of a mess from mud slides and roads closing from boulders. So we are stuck here for a little while. Although, while I write this, the rain has cleared and the sun is shining again! 

So last night during the wild rain, we decided to try out our new cotton candy machine. We ordered candy floss online, Pink Vanilla (CLASSIC), Strawberry, and Blue Raspberry. We made Pink Vanilla last night and found ourselves, eating COTTON CANDY in the rain on a Sunday night. 

We gave Frankie a little try. Her first time eating cotton candy. Honestly, it was amazing. Her whole face lit up from so much excitement and joy! Heaven was smiling down at our kitchen last night. 

I look back at the first year with Frankie and all the challenges we’ve been met with than I think, we were eating cotton candy last night at home, with our daughter. How amazing is that?! I have Faith that our life will be filled with more cotton candy moments with our daughter. 

I can’t wait for her party. Cotton candy for everyone! I hope everyone finds as much joy that day as we share every day with our Frankie. 

 

 

Let them eat cake…

Frankie’s birthday is coming up in March. It will be her first birthday. The “First Birthday Party” is certainly a huge milestone. I’m sure most parents can relate, but for Mike and I it’s a huge celebration for us making it through our child’s first year. I mean, wow. One year of raising our first child! That was crazy, amazing, and exhausting.

With Frankie’s diagnosis of Pku we have learned so much about ourselves as Parents and our Daughters unbelievable bravery and amazing spirit. I can’t even count how many blood tests, along with doctors appointments, and other testing.  But through it all she has the most unbreakable spirit.

She carries herself with a smile and curiosity about the world that is just so beautiful. She might be only turning one but I feel like I’ve known her all my life.

So the FIRST BIRTHDAY PARTY! Frankie is eating solid food now but obviously not adult food yet. She is a Vegan, but she can’t eat nuts, most legumes, Aspartame, or grains. Anything high in protein is out. Her body allows 6 grams of protein a day with KUVAN.

Kuvan is her medication that she takes that allows her body to process more protein. About thirty percent more protein than she would be able to eat if she wasn’t on Kuvan. Which sound’s crazy to you maybe, but for us 6 grams of protein is a huge number compared to 3-4 when arranging her daily meals.

Look at it this way, my daughter can eat “ONE EGG” that would be her daily allowance of protein. But she will never eat eggs. She will be on an extremely low protein diet all her life so eggs, are not options right now.

But what do you do? As her parent I am her advocate for her health, and we want to educate our friends on her diet. But since it’s her first birthday she won’t really be eating much of the food other than a small amount of what I have prepared for her in advance.

So out of respect for our daughter, we will serve both Vegetarian and Vegan options this year only. This is her day. So in the future she will be able to eat absolutely anything and everything at her parties. This year however we will bring a mix of food but no Meat.

Then came the decision on what to do for her dessert. Dear Lord Help Me… Cake? Do you have any idea how much protein is in cake? I’ve dreamed of the moment that she get’s to bury her face in cake and frosting. Growing up when I would attend my nieces and nephews first birthday that was always such a great moment. Would this moment be taken away from us? That’s fine if it is. Whatever is best for our daughter.

Guess what! We will have cake! WE will let them eat cake! cakes

I double checked with our Nutritionist and all is great!!!!! Protein Free! And there is Icing with No protein! She will have a gorgeous first birthday cake! The substitute for eggs in the recipe will be to use applesauce instead, and you are good to go!

We decided the theme of Frankie’s First Birthday Party, “Cotton Candy!” Also Pku Friendly! Just sugar after all.

As a Mom I want what’s best for our child. I understand she will never have a “Normal Life” because  she will have an “Extraordinary life!” We will do everything in our power that we make every day special for her. And this first birthday is going to be a celebration of her life.

Now to plan the rest of the party. Has anyone noticed how outrageous the price of balloons have become?!

The Vanishing Friend Trend

The thing you fear. No, not my friends. They will know I’m a cool Mom right? They won’t disappear. The truth is your REAL friends will stick around. Maybe not in the same way. But they will be there for you. 

When you are pregnant, your friends are there for you for anything. Your baby shower?! Amazing. We had an awesome time. We had a co-ed adult only party with about forty of our friends. It was fantastic. 

When your baby is born. It’s a whole new Adult world. A world were your old life, and your social circle is abruptly changed. For many reasons, one, some friends aren’t “baby people”At least that’s the excuse you hear. Reason two, “too busy”. Reasons three, “they aren’t your friends”

I’m not trying to sound negative. But it’s the truth. So Mike and I have no family here. All of Mike’s family is back in Chicago area. My family is in Washington State. My Mother died of Cancer in 2011. Thank God for two women in our life that live in California. They sacrificed so much from their family to be here with us when we needed help. And thank God for our Family. They helped out in any way they could from a long distance. 

Frankie was diagnosed of PKU on day four at the hospital when we were packing to leave. Our whole world was turned upside down. From this excitement of going home with this brand new gorgeous child, to a brand new gorgeous child with a disease which we had no clarity on what to do. 

When we got home we were zombies. We were of course consistently smiling and loving toward our child, but when she slept we cried and couldn’t tie our own shoelaces, let alone make dinner. 

We emailed our circle of friends, which included family, and our bridesmaid’s and groomsmen which we consider our closer friends. Let’s just say, when bad things happen in life, God makes it very clear to you who your true friends are. 

It was like a cleansing process for us. This past year has been an eye-opening experience for us. But honestly, I think it’s a blessing. I have experienced this phenomenon twice in my life. When my Mom battled cancer for four years, I watched people that had been close to her, her whole life drop out of her life like flies. “Too busy,” to hold her hand or call. “Too busy, TO CALL.”

 When her funeral came it was unbelievable the amount of people that showed up. And I sat there looking around at all these people in tears and thought, where were you? Where were you when she needed you? But you can’t get angry, you have to forgive and just let it go. My Mom was the most kind, loving, person you ever met in your life. She never said a harsh word to another person. 

She drove an H2 Hummer in Washington. Main reason, because it’s the safest car to drive and she had four grand-babies at the time and wanted them as safe as possible. Once we were on the freeway and this person drove by us and flipped her off. Believe it or not, it happened a lot. I was shocked and said angrily to my Mom, “Oh my Gosh Mom, that guy just flipped you off!”

Her response, “Oh sweetie, he was probably just having a bad day. We should pray for him.” 

This was her. She always saw the best in people. 

The second time I witnessed this “friend’s disappearing phenomenon” was after she was gone in my Father’s life. Friends, dropped like flies. My Dad told me that when you die, if you can count five true friends on your hand you’ve lived a successful and fulfilling life. 

I think it’s true. Look at your hand and count the people that if you called right now and said I need you, they would drop everything and come to be by your side. If you can? You are a very blessed individual.

When Frankie was diagnosed, that first month, we could count the amount of people that showed up for us on one hand. And you know what? Those are the same people today that check in, support us, and love on us. 

I think the point of writing this is, don’t get discouraged. You will go through sort of a mourning process. But take it as a blessing. You not only find out who your friends are, but you find out who YOU ARE. How strong you are! And you are always stronger than your think. God NEVER gives you something that you can’t handle. Your child is amazing! You are amazing. And you can get through anything. 

Perhaps you might be reading this and your friend just had a baby. My advice to you is find a day that you are free, call them, visit them, bring food, bring some flowers. Ask what diaper size their child is in and bring them a pack. Being a parent is overwhelming. It takes extraordinary sacrifice. Any type of encouragement goes farther than you can ever imagine. 

I suppose what I’m trying to say is, Challenge yourself to be a friend to someone who needs it more than you will ever know. 

 

The Playground

On Sunday’s after Church, Mike and I love to go to our local Farmer’s Market in Malibu. I highly recommend it if you are in town. Right now Brussel Sprouts are in season! Delicious! And oh my gosh the Hummus lady is the best. Try her garlic Hummus you will die. Also the flower bundle’s there are usually just $5 and they last for two weeks. I swear! He is the best, and also the sweetest man. 

Anyway, one of my favorite things about our local market is just a few steps away is our Malibu Country Mart where they have a fantastic playground area, surrounded by restaurants, shops, and Coffee Bean. I highly recommend Japanese Cherry Green Tea on Ice. It is so delicious! 

The PLAYGROUND. 

It can be intimidating to the new parent. I remember the first time I went to the playground I was so nervous. Frankie was so small and I thought, oh my gosh she’s gonna start crying and all the parents are gonna roll their eyes at me because they are gonna think I don’t know what I’m doing. Oh no, is some awful lady going to comment on me feeding Frankie out of a bottle. All these negative thoughts, NEGATIVE. I mean negative. You are a Mother! BE PROUD! Look at what you’ve accomplished! Don’t worry what other people think! You are amazing! Go out into the world and don’t worry so much. 

But that first time, I stressed. I had this huge packed bag with like three back up bottles, and ten diapers, and a million toys. I don’t think I had a shower in two days. But it felt so amazing to be out in fresh air. I thought people were looking at me, I felt unnerved by the Mother’s of twins that seemed like they had their live’s together with their minimum packed Hermes Bags, and perfectly groomed hair, often accompanied by help of some sort.

Now I am not trying to poke fun at all. Malibu is just full of character. Celebrities with Children, the wealthy come to play, nannies, and regular families. But wait, this is the great thing about the Playground. It’s just parents and kids really. 

And you know what is amazing about that, we are all the same. I look around and all the parents there are the same. We are all dealing with the same stress of keeping our children safe, happy, and healthy. And I think it’s wonderful. People you wouldn’t normally find yourself striking a conversation with, you find yourself laughing with over your child’s gleeful giggling on the swings.

I swear, playgrounds bring out the best in people. We always have the best time. It’s such a wonderful place to mingle and meet other families. All the kids’ run around so happily. And there is a convenient place to either caffeine up in eyesight of the kid’s or have a glass of wine if so inclined. 

It’s fantastic! My daughter absolutely loves this swings. She just laughs and laughs, and when she’s done laughing we know she is done. She loves watching all the other kid’s play and it’s truly one of the best things you can do for your young child. Get them out there and let them mingle. 

I know you want to keep them home and safe in your little orderly bubble. But seriously take them out for a walk and to the park! Enjoy this time together. They will love it! I swear she sleeps better at night as well. 

Get out into the world and go to the playground. It’s worth it! 

The Aquarium

On my birthday this year Mike took Frankie and me to the Aquarium of the Pacific. They were doing an exhibit on Sea Dragons. It was truly amazing. I don’t know your thoughts on Aquariums. I wasn’t really into the whole whale thing at sea world. I do like what they do for conservation, but now i guess the whale portion is officially closed so thats good. But I have to wonder what’s going to happen to those poor whales that can’t fend for themselves? Yuck.

In general, I LOVE AQUARIUMS. Any time I go to a new city and they have an Aquarium I go. My favorite by far was Chicago’s Shedd Aquarium. If you are going to Chicago any time soon, in my opinion, it’s a must. Their exhibit for the Amazon is fantastic.

Anyway, we went to one of our Aquarium’s in Long beach called the Aquarium of Pacific. It’s great. This particular trip was extra special because we got to bring Frankie with us. I truly hope that she loves Ocean life as much as Mike and I do. I love scuba diving and snorkeling. Surfing! I used to surf all the time but I hurt my lower back so I’ve been out of the surfing game for a while but hope to get back into it again this summer. Since we live in Malibu Frankie will be a beach baby for sure.

Frankie absolutely loved it. If you have a small child bring them. Frankie was six months old when we brought her and it was nothing but smiles. It’s a very calming environment for them aside from the random squealing kid, or yelling parent.

aquarium

This visit they had an amazing exhibition on Sea Dragons and Sea Horses. Did you know that Sea Horses mate for life? Also the Female sea horses lay eggs onto their Male Partners and the Male Sea horse will then keep them safe until they are born. Then, when the Sea Horses are born they are born completely independent. Those babies are on their own in that huge ocean! Frightening thought. Must be how parent’s feel on their child’s eighteenth birthday. 

Perhaps one of the reasons Sea Horses mate for life is that the Male carries his ladies children? Like he completely shares the pregnancy with her. I think that is a testament to any man’s character in general. Sharing the pregnancy? 

leaf

My husband for example, when I was pregnant he was truly a gentlemen. He was so kind and considerate to my needs. He never pushed me, or became overbearing, he was there for me if I needed him, but let me be independent as well. 

When I was seven months pregnant I was in a horrible car accident that I can’t get into now because it’s still pending lawsuit. I will say this, I was at a red light waiting when I was slammed from behind. But that’s all I can say. 

Then Mike and I when I was eight months pregnant were side swiped on the freeway coming back from San Diego. A second horrible car accident,  which again I can’t get too much into. But I will say this, when these things happen,you truly know who your partner is in this life. You know who your friends are. 

My Husband is my rock, and by very best friend. When you journey through this world you want to surround yourself with the people you love. And if you are reading this, and you feel alone, I promise you, you are never alone! But you have to get out and go find your passion and find those people that share your passion. 

That’s something I love about Aquariums, the closer you look the more you see. You find all these small amazing creatures. Then you take a step back and look at the Aquarium as a whole and it’s this amazing community. Every living thing inside serves a  purpose, from a shark to a shrimp. 

It’s a gorgeous world we live in. Don’t miss it. jellyfish

Sunlight

Mike and I stayed up late the other night because we couldn’t stop watching this episode on Dateline about Kid’s diagnosed with a skin condition called XP.

Xeroderma pigmentosum (XP) is a rare autosomal recessive genetic disorder of DNA repair in which the ability to repair damage caused by ultraviolet (UV) light is deficient. In extreme cases like the ones shown on Dateline those kid’s can never go in the sunlight without a specific outfit requiring being fully covered head to toe with a huge shield to guard the face.

We watched in silence. So I’m sure after reading what I just wrote you either said out loud, “Those poor children,” and yes you are right. It’s horrible. One of the amazing things about this particular dateline was that they are working on a  possible cure for this disease. One of the other amazing things we learned is that there is a camp designed for these kids to attend so they can spend time with other kid’s with XP.

So after the show had finished, Mike sighed out loud, “We are so lucky.”

I couldn’t sleep. Day’s later, I can’t get it out of my head. Yes, of course, we are lucky in so many ways.  Then I thought, but so are they. Don’t get me wrong, it’s horrifying the struggles those kid’s face on a daily basis. I am not in their shoes, and I am not going to speak for them, nor will I speak for anyone else, but I had a moment and thought. Those kid’s are lucky in so many ways as well.

What I learned from that Dateline was how loved they were. How appreciated they were. They were surrounded by people who were fighting for them and loved them.

Don’t we all wish we all were surrounded by people like that? I certainly do. I hope they someday I will turn on my television to Dateline and see a special episode on PKU and that they indeed had found a cure. That would be remarkable. A dream come true.

A world with no more blood tests for my daughter, no special diet for her, she can go anywhere and eat anything she wants. But no that’s not our reality and that is fine. We will fight for her, and love her, and make sure she is surrounded by people who love her and advocate for her every day.

We all have struggles in life, they come in all shapes in sizes. Some show up sooner than others. But rest assured that Frankie will always be taken care of. And I have a good feeling those kids with XP will always be loved and taken care of as well.