Six Years of An Incredible Journey

Six years ago, this night...I laid in a hospital bed embracing my tummy along with my husbands arms around me embracing my pregnant belly, hands intertwined with mine, waiting for the next kick from the strong little babe inside me. We talked quietly about our excitement, joy, and unrelenting fear of what the next few days would bring. We'd feel a little nudge here and there and would just smile, but buried deep behind those smiles were overwhelming waves of uncertainty. Daddy Brian would kiss my tummy and tuck us in for the night and head home to turn around and repeat the "work, kids, house, hospital routine" the very next day. What we didn't know, was that our night 6 years ago would be our last goodnight routine for that chapter to our journey. Throughout the night I prayed for peace and knew in my heart that the morning would start a new chapter of our life.

The morning light brought the sounds of hospital staff arriving for their shifts, the smell of food carts traveling around to deliver all of the patients meals, phones ringing, muffled voices, and my daily prayer to find the strength to start yet another long day in my hospital bed. That bed became my new home, my new safe place...fully knowing it was the only location where the life of our little baby would be protected.

As the morning drew on, we learned that our baby boy needed to leave my body and say hello to the world. Phone calls were made, loved ones appeared, and we dug deep to find everything it took to accept that our beautiful son would be entering the world 14 weeks too soon. To this day... the memory that is so vivid it hurts... was the fact that not only were we robbed of the privilege of feeling him in my tummy, but also of the privilege of holding him once he was born. I'm sure every parent out there understands the emptiness that you feel when you can't hold or touch your own child.
Praise the Lord that the gaping wound was soon consumed with energized emotion and the act of eagerly seeking knowledge about how to be the best parents we could be to a baby so sick. The simple fact that he was the size of a beanie baby and covered in tubes and hooked up to machines to survive became our reality. As difficult as it was at the time, it was nothing compared to what the Lord had planned for us as parents to Kaden. Every chapter house another story on this journey.

Every milestone, every achievement, every diagnoses and every difficult decision to care for Kaden brings a great flood of feelings that can't truly be described in words. Our journey has been a road less traveled by. We are fatigued at times, yet blessed abundantly. This year is one of specific significance...this is the birthday that we only hoped to see. This is the birthday that would supposedly  define our sons prognosis. Yet, with grateful hearts we have accepted that every day is a gift and no diagnoses, test, set-back, medication or any other negative factor will EVER define our son. Kaden has defied the odds and is the epitome of strength. He is God's child, and we are entrusted with him. Cheers to a wonderful day tomorrow, a birthday full of smiles and excitement, a day that can only be recognized by saying thank you. Thank you to our Lord, our children, our family, our friends, our church, our medical team, and the little babe that is now about to celebrate his sixth birthday.

Love to all, Julie

These Precious Things

So I suppose it's time for another update....Since our last update, Kaden's been in and out of an "Autonomic Storm". For over a week he decided he simply wasn't going to eat. We really had to encourage him to eat. He had another GI bleed 2 weeks ago. We're back down to 32 lbs. ;(
He had an Upper GI Series done, which was on the cusp of normal. The tummy doctor is investigating mitochondrial diseases and Crohns disease. For some reason, Kaden isn't absorbing nutrition. He's started talking in his sleep a lot, and is having more episodes of apnea. Still using oxygen off and on.
We met his new neurologist. Boy...that was interesting. He is baffled by Kaden as well. He increased one of his medications to help with all of the foot and knee pain he's been experiencing. we're to follow up with him via phone this week.

On a good note, Kaden made his first official friend here in Myrtle Beach. He's still not sure how to play nicely, but thank goodness his new friend is very patient with Kaden.
Also, Brandon has done a phenomenal job encouraging play time and bonding with his little brother. Kaden has now lost 2 teeth. Very exciting!

I know this is a short update, but our hearts are heavy waiting for more information about his diagnoses.

We are still dealing with strange color changes. He is still functioning quite well, but is really unstable at times. Please keep him in your prayers.

We love you son! Keep up the strength that we know you have. Continue to grow and improve! May the good Lord continue to embrace you in his arms and give you strength. 

Jeremiah 29:11- "For I know the plans for you declared the Lord", "Plans to prosper you and not to harm you, plans to give you hope and a future."

Our trooper

Hello Family, friends, and followers,

Yesterday was a loooong day! Phew! Kaden was certainly a trooper. He had to have another nuclear medicine study to make sure his stomach is emptying correctly......and he passed! Yay! Something to celebrate. We also had to visit the endocrinologist (blood sugar and growth doctor) to follow up with her. Kaden's blood sugar still suggests that he's running on the low side, but he does a great job with his finger sticks when we have to check his sugar.
 The endocrinologist informed us that he has a minor problem with his thyroid, but she was more concerned that he's still so tiny. That seems strange to us because he simply "looks" taller. Perhaps it's just his face maturing and his overall stature. Or as his friend would say "he's walking tall." That speaks volumes for his character.
We are at the point now that we are using a ridiculous amount of extra virgin olive oil to give him extra calories, but all of his doctors are supportive of the idea, because he's gained a pound! However, he's still not on the growth chart at all. So, he had to get some lab work completed to run some more extensive testing. Unfortunately it appears that Kaden has a new hernia and may need that to be repaired. His stomach is shifting upward, but he really doesn't complain of pain very often, and when he does it's just for a brief moment. We will also have an appointment with the neurologist to investigate the foot pain he's been experiencing. We also need to investigate why he's having so many episodes at night again. Thank goodness those tests are not invasive. There comes a point when we have to speak on behalf of our beautiful son and simply say "no".

He is still not tolerating his feeds very well, but his big brothers and Daddy have muscle contests and praise Kaden about his muscles to encourage him to try and eat. Moments to savor. Memories to eternally retain.

Sissy is still working with him and he recognizes almost every letter now in both upper case and lower case. Wahoo! He's enjoying his brothers and imaginary play every day.

We have a friend we call Mr. Jimmy. Kaden loves him like a grandpa. Mr. Jimmy bought Kaden a big boy bike and with some practice and help from his brothers he should be riding it all by himself soon.

For now, they are double checking a few things and checking a few new things. We will post an update when we get the results.

To the older kids: One day you will read this blog and we must say to all three of you- Your sacrifices  for your little brother will never be overlooked or forgotten. You all help in so many ways to make sure your brother is enjoying his life as much as possible. As you all age, your patience and grace grow as well. We are so proud of all three of you, and so thankful to God that He chose for the 4 of you to be our children. We couldn't be more blessed and we humbly thank Him. Remember every day that you are all so special in more ways than you could ever imagine.

To Kaden: Philippians 2:13- For it is God who works in you to will and act according to His good purpose.

You son, are a miracle. We've never seen so many lives touched by you. That's right son, you. A little tiny boy is reshaping so many peoples' lives and showing them what really matters every day. It's not stuff or money or what kind of job you have. It's about so much more. Thank you for the reminder and the sweet way of teaching humility.

Love to all, Brian and Julie

It sure has been a long week. Kaden is still on oxygen intermittently. His tummy isn't working quite right and we're pretty sure he has a secondary infection. Lot's of wet coughing and suctioning. The amazing thing is.... he's dancing around tonight singing "welcome to the Space Jam". He is wearing a white tank top and has informed us that he "feels" like a real basketball player. He followed that up by saying "oh, wait a minute, I am a basketball player Mommy. Just ask Daddy and Evan." He amazes me.

I'd like to share some great news. We've been very blessed this week in several ways. With the support of a wonderful family I met, I just might be able to start networking and finally creating the advocacy and awareness support group for families like ours! Please friends, spread awareness about autonomic dysfunction. You never know who may need to hear about it.

Same old issues this month folks. Intermittent oxygen and lots of observation. Kaden can write his own name now and is still excited about Mondays. He loves having Daddy home more often. He's getting more imaginative every day, but is struggling again with gaining weight. He's stayed the same weight despite our new efforts using olive oil. The whole family helps take care of him and Kylee has become his pre-school teacher. He responds very well to her. It's so nice to have her time with him in addition to the learning pages he completes for Gran and us. Evan's been playing with him outside a little bit more, and he gets to talk to Brandon on Skype. He's so excited Brandon's coming home in just two weeks. Daddy continues to play basketball and several imaginary games with him. He continues to have apnea and some low oxygen saturations so we still monitor him very closely. We are still waiting on the geneticist to help us figure out our tricky little man. Other than that, he's doing well.

P.S. He lost his first tooth!

Love to all, Julie

As for you Kaden- today of all days is a day to celebrate being your mother. You truly are a gift along with your siblings, and I couldn't be more blessed as a mom.

This month has been a time for growth. Kaden is growing a little bit and we've discovered the miracle of olive oil to increase his calories. He is starting to show more enthusiasm for life every day and absolutely loves Sundays. He has the best Sunday School class equipped with a nurse, great teachers, and a respiratory therapist. Saturday nights he always says "Guess what tomorrow is? Da da da da....Sunday Sunday Sunday!" Let me tell you, it says it with great excitement. Daddy is teaching him to play basketball and he has quite the dribble. He also has a great friend named Mr. Jimmy. Mr. Jimmy is a kind older gentleman that Kaden loves to visit with. He has a heart of gold. We are still working on some para-sympathic issues, but with time and prayer we know the Lord will guide us. We are still waiting on results from the geneticists about his opinion as to were we are to go from here. His blood sugars have been more stable as long as we really stay on top of it, but we are back to dealing with his heart, impulsive behaviors, and some respiratory issues. No worries, just a lot of rest after play, observation, and frequent vital sign checks. He is so enthusiastic about life and excited to learn more about it. It's so beautiful to see a kiddo so intrigued about things we take for granted.

Blessings, Julie and Brian

Forgot these photos

This is the atrium. It's like a sanctuary for the children.

He will continue to win....

Positive thinking and prayer are so important these days. So, his pancreas decided to stop working for a few days, and then his GI system....we are fine now. He's very brave with his finger sticks to check his blood sugar.  A few more days in the hospital a couple of weeks ago and a trip to Nuclear Medicine and the Geneticist this week. Who knows what we'll find out, but we sure hope he can just start gaining weight! Face matures, weight struggles but he grew 1/2 and inch!

Kaden- You continue to amaze us everyday. You are brave. You are strong. You are a valiant warrior.
Evan- You are an incredible big brother. Thank you for being you.

Love, Us