Traveling for the First time… with PKU

JUST BREATH. All is going to be fine. You are going to travel for the first time with your baby with PKU. I promise you can do it! You are strong and brave and with what you’ve been through you can handle anything!

This year we traveled to Chicago for Thanksgiving with most of my husbands Family. This was Frankie’s official first time flying. She was eight months old at the time. We were a little terrified to say the least. So I started trying to find information online about traveling with a baby specifically with Formula and Medication. There was one article, which didn’t help me much at all.

I’m writing this blog to help other Parents traveling for the first time to put them at ease. It’s okay. You can do it! It’s not nearly as scary as I thought it was going to be.

It’s shocking how nice people can be when not only, you are nice, but also stay calm and explain your situation.

So first with Frankie’s PKU I went onto TSA’s website to look up all information about traveling with formula and medication. Now on the TSA website they did disclose to bring any necessary information you need to identify what you are carrying. So we had UCLA print a letter telling them we are traveling with KUVAN, and PERIFLEX which is her Medicated Formula. TSA NEVER ASKED TO SEE IT. Also we brought a copy of Frankie’s Birth Certificate. I do recommend having it with you just to have it, but no one ever asked to check that either. So don’t bring it out unless they ask for it.

I think that perhaps they might ask for International flights so I would recommend having the letter prepared if you are going through customs but don’t worry if you are staying in your country.

So this is how it goes. Bring your car seat and base. I bought a bag online for them that worked as a backpack.  Airlines don’t charge to check a car seat so don’t worry. You can check it at the curb or at the gate. I recommend checking it at the curb when you get there. Just one less thing to carry.

We brought our carseat, base, packed in a special backpack to check in right away as just mentioned. We each brought a suitcase to check. Mike packed his own bag and I shared a bag with Frankie. We brought one carry on, and her diaper bag. Then the Stroller, with Frankie sitting comfortably inside.

If you need more than that, well you aren’t gonna have any hands so I wish you the best of luck but I can assure you, you can do this.

In a carry on suitcase I packed her Periflex, her Kuvan, Enfomile, baby food, cereal puffs, and her PKU Gel packs. I also put in a change of clothes for her, a blanket, and a few extra diapers, and a package of wet wipes. Just in case our luggage got lost we would have everything crucial we need for her.

We brought bottles that already had the prepared POWDER formula but didn’t add water in  because we wanted to make sure it was fresh for her. So just buy a water bottle when you get through security. However we did prepare two bottles for her. When you get to security you have to take your kiddo out of the stroller to walk through and then they will pat your child down lightly.

Then they will take your suitcase and diaper bag to the side and swipe to check everything, put it through their screener and thats it. NO PROBLEM!

I promise you. I know how terrifying it is to travel with liquids these days. They make it really easy on you. So don’t worry! You are amazing!

Don’t overpack either. You can buy more diapers and wet wipes wherever you are going if you need them. Also don’t bring ten thousand toys for you baby on the plane. They will not have any interest. Maybe bring one or two.

The Flight Attendants were awesome. They let my husband or myself stand in the back of the plane with Frankie if she got upset.

We also bought Baby Ear Muffs for her to silence the noise at takeoff. I do recommend that because it is pretty scary at first so silencing the noise is good.

SO just be prepared that your baby will probably get upset at some point during the flight but I promise it will be okay. Most passengers these days have earphones in their ears the entire flight. They can’t hear your baby. They are invested in their movie or music.

If you do encounter a grumpy passenger just laugh and say, “well we were all babies once!”I know how lame that sounds but whatever. They can go eat a bag of rocks. You are traveling with a baby! They should be cheering you on. So don’t worry about “Grumpy Pants” just take care of your family.

If you need any other traveling for first time with your baby with dietary needs please message me. Good luck! And HAPPY TRAVELS!

Advertisements

Say Hi… and wave at Momma

This week Frankie  has learned how to wave and say “Hi”. She also knows how to say, “Hi Momma and Dada” as well as “Bye Bye Dada” for when he leaves to go to work. I watch her in awe. She is my little hero. 

Heroes come in all shapes and sizes. You can learn so much from your children. Not only do you see yourself in them every day but you find something new and extraordinary every day with them as well. She is amazing. She is everything. 

I check on her every night and lay my hand on her back while she sleeps to feel her breathing. When I feel her back moving up and down a huge sense of relief and thankfulness sweep over me from head to toe. 

Being a parent has been the most wonderful experiences of my life. It’s a gift, an honor, and I don’t take it for granted.

When you’re pregnant they advise you to take every test known to man kind. Doctors want you to prepare for the worst it seems. They want every problem to be known. A lot of joy can be sucked out during your pregnancy if you let it. I suppose that’s why the phrase was coined, “It’s tough being pregnant.” Because it’s the God’s honest truth. 

Pregnant women reading this, you are amazing! You are gorgeous! Hang in there you are doing great. 

Have you heard of the Nuchal Translucency scan? You go in-between the eleventh to fourteenth week. Basically they do an ultrasound and it measures the fluid in the neck for risk of Down Syndrome as well as see if they can depict any heart defect. That’s a simplified version.

They want you to be aware that it’s “Legal” to back out if you find out your baby isn’t “Perfect.” And by making the choice to continue your pregnancy after this test you can be further prepared by your decision. 

Go ahead. Get upset. Shake your head at me. Or nod yes with me. I don’t mind either way. 

Yes, I don’t agree with abortion under any circumstance. There are many, many reason’s why I don’t agree with abortion and I am not going to go into them. Just know that’s who I am.

When Mike and I went into the office that day, we had both agreed without question, that no matter what happens, our baby, was exactly who they are supposed to be. This ridiculous fear that they instill in you for nothing. Every baby is perfect in their imperfections. Every human being is unique. 

So I’m laying on the table and they start the ultrasound and their she is, though we didn’t know she was a she. She is sleeping and suddenly she wakes up lifts her hand and waves at us. The Nurse starts laughing and we are in awe. There is our child waving at us and for a while.  She then stopped for a moment. Then she waved again. After a moment, she rolled back over and went to sleep. 

Today when Frankie waved at me this amazing memory flashed into my head. I thought, do people know? Do they really know? How amazing this is?

They told us that everything came back normal. That we have this perfectly healthy baby. Honestly I wasn’t even listening. They didn’t have to tell me anything. I didn’t care what they had to say. This twelve week old baby waved at their Momma. 

Frankie was born with PKU. Nothing prepares you for that. But such is life!

We are all unique. We are amazing. We are resilient. We are human. And we fight! We fight for our families and we fight for life. 

This gorgeous girl today waving at me with this huge goofy smile on her face I couldn’t help but think of those parents out there that decided to back away after whatever news those doctors gave them and it brought tears to my eyes. 

Listen to me, you are STRONGER THAN YOU THINK. Trust me! I know. 

God will not give you something you can’t handle. 

 Please never give up. Because there is a gorgeous waving nine month old smiling at you at the end of it all. 

Eczema? Awesome…

Welcome to Awesome town. I’m the Mayor. One of those towns where there’s always a rainbow because it rains a lot. 

No listen, I am thankful. I am thankful every day for the life I’ve been given. I’m thankful for my amazing husband and my gorgeous daughter. Let’s just say that luck isn’t always on our side. But we stay faithful in our love and faithful to God and just pray each day will get a little easier. 

It’s like that great phrase, “God doesn’t give you something that you can’t handle.” Well I think God must think Mike and I are made of steal or something. 

So a couple months after Frankie was born we noticed a little skin irritation. Frankie was born with PKU if you haven’t read my previous blogs. So when she was having her weekly appointment at her Pediatricians office I showed it to him. At first we thought it was just a minor skin irritation. Dry skin perhaps. Let’s just put lotion on it. 

Each bath I would scrub and put lotion after. Nothing. It was over a month when she got a couple other patches. One on her shoulder and one behind her leg. One of the amazing side effects of PKU we came to find out is Eczema!!! Not uncommon in babies at all. But unfortunately our baby has plenty of other things to deal with then this “BS”. 

I tried everything. I mean this girl has been lotioned up!!!!! Our doctor recommended trying Eucerin. Sorry Doc. I mean weeks and weeks are going by and nothing. So here it is. 

One of Frankie’s Angel’s her Aunt Leslie used to be an RN. She also is a Mother of Four. On a visit to her house over Thanksgiving she gave me this. resinol

Sorry It’s a little blurry. But it’s called Resinol. She gave it to me because she swore it was the best Diaper Rash cream on the planet. You don’t argue with a woman with four kids. You just say thank you. 

So during Mike and my battle with Frankie’s skin Mike thought out loud to me, “Hey honey, why don’t we try that amazing butt cream Leslie got us?” 

I thought. Why not?! I mean we have tried everything else right?!

So here it is folks. Combine AVEENO BABY ECZEMA TREATMENT and a little bit of RESINOL on those patches. If the patch is bad just put a big slab of Resinol on there until it starts to go away. I put on Aveeno all over Frankie after her bath’s anyway. But start with a patch of Resinol on those spots and decrease as it disappears. I’m not kidding. This stuff is a miracle! 

We have next to no problems since! Any time we see a patch about to start we slab this on her and it’s gone. No matter what I still use Aveeno Baby Eczema on her after she baths. But this is the answer to the patches that show up. 

This stuff is legit! So that’s my little tip! Oh and for diaper rashes this is the “ONLY STUFF TO USE” not kidding. Best stuff ever. So thanks Leslie! You are the best! 

We Vaccinate

Okay, lets start by saying we are a pro-vaccine family. BIG TIME! We are in the worst Measles Epidemic in over twenty years. Measles. That is total nonsense to me. It has also been Scientifically proven that there is absolutely no link with Autism to Vaccinations. In fact the doctor who conjured up this ridiculous theory, Andrew Wakefield, has lost his license to practice medicine in the U.K.

Needless to say I don’t know what your thought process is on vaccinating your child but I truly believe the GOOD outweighs the BAD. But sometimes, bad things happen, and in our case we had something bad happen.

We went in to our Pediatrician for Frankie’s Six Month shots. Flu shot is included. Frankie acted a little irritated that day but nothing to be concerned about. But the next day she was spastic. That night trying to get her to sleep was impossible. She couldn’t stop moving. At one point she looked at me with her Big Brown Eyes and I could tell something wasn’t right. So I started to text Mike at work concerned she was having a seizure. I had read one of the side effects of PKU was seizures so that’s immediately what had popped into my head that was happening.  He told me what seizures look like and Frankie didn’t seem to be fitting that description correctly. Looking back,  I should have just trusted my Motherly instinct and just and taken her to the Emergency Room to rule anything out.

In fact my advice to any parent, if you don’t know what is happening don’t wait just go. Let the professionals do what they do best.

So, I gave her some Baby Tylenol and she went to sleep. The next morning Mike and I took her to our Pediatrician and he said she was more than likely struggling with Muscular seizures. If we would have taken her to the Emergency Room they can give her medicine to stop it. I was horrified. How could I have ignored this behavior. Our Doctor assured me I was fine and that she seems totally fine but recommended for us to take her to see a Pediatric Neurologist just to rule out Epilepsy.

Great. More testing for our daughter who has had nothing but doctors appointments, and blood tests from the moment she was brought into the world. But yes, of course we would take her. She is our daughter and we will do anything and everything to protect her.

So we went, and they recommended that we do a test for forty-eight hours. We had to have her hooked up to twenty-four electrodes that they put against her head and bandaged her like a mummy. Also two wires were connected to her chest to monitor heart rate. The wires all collect to a unit that we carry with her everywhere, as well as a camera unit that was ENORMOUS in this roller suitcase to record her activity. WE would carry the camera in every room and set it up.

YOU DON’T SLEEP. I couldn’t let her leave my side because she could choke herself with wires. It was physical torture. It was truly one of the worst experiences of our life. When Mike got home on the second day from work I broke down crying because Frankie was screaming and trying to pull out the wires. He called our doctor and they agreed they had enough hours for the study.

We then had to take off her bandage then each wire which was glued to her head and two to her chest. She screamed crying. After we had to give her a bath to wash off all the gunk on her head, we put her in her pajamas, and gave her a warm bottle. She almost instantly fell asleep from exhaustion. After we laid her into her crib we stayed up all night horrified.

badday

A couple of weeks later we received the results and we could officially rule out epilepsy.

During that time we found out that the Flu Shot is cultivated in Egg Whites. All though the shot itself doesn’t have protein in it somehow it had caused some kind of chemical reaction. It was as if Frankie had received strait Protein in her body. Her muscular seizures were caused from a  severe reaction to her levels shooting to the sky. We went to our Metabolic Team at UCLA and they told us they hadn’t heard of such a reaction from the Flu Shot from their PKU patients.

We were dumb founded. But then we did our research and discovered that PKU is an ongoing discovery. Every case is different.  Not all babies have the reaction our daughter had. We were angry though. We were angry that we weren’t at least warned that the Flu Shot was cultivated in Egg Whites when everyone knew our daughter has an intolerance to Protein.

But something we have learned is that getting angry doesn’t solve anything. For every problem there is a solution. We WILL vaccinate our child. We will protect her in every way we can. So the answer we found? There is a “NASAL Flu Vaccination”. In 2016 they did not manufacture it, however, our Pediatrician said that will again. So until they do Frankie will not be receiving that particular vaccination.

We are thankful. We are thankful every day that we have this amazing girl. This was a learning experience for us and we take everything that comes our way with the attitude that we WILL get through it. There will be some tears, but we WILL GET THROUGH IT.

Breast isn’t always Best…

So, our sweet daughter Frankie has PKU. That is established. That is really what my blog is about. To spread awareness of this metabolic disease as we navigate ourselves through the world that we live in. 

I am a new parent. Nine months and a few days into the world of Motherhood.

We had never even heard of PKU until we were leaving the hospital and a terrifying nurse with a  mask on her face, (FOR NO REASON), walked into our room, with not even a hint of kindness in her voice and said, you can’t leave. Your baby failed one of her screenings she has to stay for more testing. 

From excitement, in an instant, to fear. FEAR. FEAR. 

What’s PKU? Is our baby going to die? What is happening? 

My baby never latched on. She just wasn’t into the whole Boob thing. Every nurse and their mother tried to shove my boob in her face. Tears and frustration later an angel appeared in the form of a “Lactation Consultant” Sweetest woman on earth. Flat out told the nurses to buzz off, brought in a pump, and our baby couldn’t be happier on earth to get Momma’s milk. Little did I know my milk was hurting her. 

You see there is Protein in Momma’s milk. So the more milk she was getting the higher her Tyrosine levels were raising which can cause serious damage.

Let’s skip to six months later shall we. 

Kid’s birthday party. One of my husband’s coworkers invited me to her sons first birthday party. I went with Frankie and we were sitting on a couch. I was feeding her from a bottle. Lost in my own world another Mother came in with her child who started playing on the floor. 

No “Hi.” “How are you?” “How do you know… so and so….” Strait to. “THAT’S BREAST MILK RIGHT?”

I looked over at her. What was going through my mind? WE have had that same comment thrown in our face three other times since Frankie was born. Strangers, throwing that comment like hurling vomit on your brand new shoes. 

I couldn’t take it any more. I’ve been polite. I’ve been patient. I’ve prayed. I had HAD IT. 

“No, it’s a metabolic formula especially designed for my daughter because she has a disease called PKU.” the second it all left my lips I felt gross. I don’t owe anyone an explanation to what I am feeding my child? Also this is my families personal business. It’s not hers. I don’t know this person. 

Needless to say, she didn’t even say a word. She picked up her kid and left. I’m guessing she probably felt a little odd after my response. 

Enough was enough though. So if you are reading this. BREAST ISN’T ALWAYS BEST. So please please please LET IT GOOOOOO! This whole boob out to the world nonsense. Everyone is different. Every baby is different. It’s not a fight. It’s not an argument. Let’s keep our good grace and comments to ourselves. There are many reason’s why people don’t breast feed. Some people simply choose NOT to breast feed. That is their choice. 

If you breast feed your child. You are amazing! Way to go! If you don’t breast feed? You are amazing! Way to go! You do what you need to do to keep your child healthy and happy! 

I was adopted, I was an Enfomile baby, and guess what? I have no allergies. Not one! My daughter has PKU. She will drink a special formula her whole life to help replace the valuable nutrients she needs that she doesn’t receive from a protein diet. 

So Lady, whoever you are, and the other weird people who throw comments at people feeding their babies from bottles. If you don’t have something nice to say… don’t say anything at all. And if you have to say something, maybe say, “Congratulations on that amazing child!” Because I know from this experience any source of encouragement goes a LONG LONG WAY. 

 

Phenylketonuria (PKU)

The following is from the MAYO clinic website (Phenylketonuria (fen-ul-ke-toe-NU-re-uh), also called PKU, is a rare inherited disorder that causes an amino acid called phenylalanine to build up in your body. PKU is caused by a defect in the gene that helps create the enzyme needed to break down phenylalanine.

Without the enzyme necessary to process phenylalanine, a dangerous buildup can develop when a person with PKU eats foods that are high in protein. This can eventually lead to serious health problems.

For the rest of their lives, people with PKU — babies, children and adults — need to follow a diet that limits phenylalanine, which is found mostly in foods that contain protein.)

For more information on PKU I recommend 

https://www.npkua.org

Those are our people! 

Crawling

It’s January 2nd, and our daughter started crawling last night. She saw a purple ball, really wanted it, and she began to crawl to it. We caught it all on camera. I started crying with joy. I was so overwhelmed by how proud I was watching her do this monumental act. I told her yesterday afternoon, “Frankie, when you start crawling and walking, the whole world is yours.” Last night, the crawling began. And the world to her last night, was that purple ball that she really wanted. 

The world is a big, amazing, gorgeous place.

In the beginning God created the world, and the world was good. There was a man called Adam, super lonely, so God gave him this incredible woman called Eve. They had this amazing garden filled with life, vegetation, animals, happiness, clean water, fish, everything we would ever want. So it’s not super clear if Adam and Eve were eating the animals at that time but I would guess that they were. Not sure though. I mean until Eve ate that fruit from the tree who knows. But I will tell you this, God gave us certain animals for us to eat right? 

I know so many people will disagree with that statement, but I was raised in the great state of Washington in the Pacific northwest. My parents were both raised in Idaho, you hunt, you fish, and you eat it. After all even Jesus multiplied fish for everyone to eat didn’t he? Jesus himself was a fisherman at one point. Jesus ate meat and fish. It’s okay everyone! Eat Meat and Fish if you can. You will like it. 

PKU is a genetic Metabolic Disease which doesn’t allow the body to process Protein. That is PKU in a nutshell. That is the simplest way to describe it. And I will get into the full details of PKU in another blog, but let’s just warm you up to this idea? You can’t have protein. EVER.

We were packing to leave the hospital on Frankie’s fourth day in the world when she was diagnosed. We had a complete and total meltdown, I mean who wouldn’t? We had never even heard of PKU. What is PKU? She can’t eat Protein? That’s impossible? 

Today, Nine Months and a few days later, I have this insight into PKU disease that I would like to share. I believe in God. I believe in God without question. I think there is a reason for everything and we have to trust God and lean on him to get us through whatever life throws at us. We all have our own private battles we face that come in every form. For Frankie this lifelong battle will be PKU.  So here is the insight I’ve come to about PKU disease. 

God created the earth, and all the creatures on it. I always thought he created some of them to eat right? God is so perfect in all of his creation down to the purpose of a bumble bee that he didn’t miss a step with Frankie right? For her to get this horrible disease. I mean FOOD! She will miss out on a filet? Or Ahi? Almonds? Cheese? The list is endless. This calm came over me one day in my many arguments I was having with the Big Man. And I had this gorgeous calm understanding in the beauty of who Frankie and the PKU community are. 

God created these unique and perfect individuals so that they will never eat a living creature as long as they live. He chose Frankie to be a protector to every type of animal. He chose her. 

There is balance in this world. This perfect balance. Frankie will never ever eat an animal. To me that is amazing. There is something so pure and beautiful about that. Frankie is everything to us. She is this wonderful, amazing, child, that we learn from every day. I realized what an incredible gift to the world she is. She will be one, amongst many in this world who don’t eat any creature on this earth ever. Don’t worry she won’t miss out. I will make sure she grows up to understand how significant and important to this world that she is.

Our beautiful, amazing, sweet, and incredible daughter Frankie. 

Speaking of Frankie, I should go now because she is using  her new found crawling skills right now toward our Christmas Tree.