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.