Main fundraiser photo

Care for Kruze

Here is the story Amber wrote on fb just a few days ago:

This is not the way it's supposed to be. 
November 23, 2016 is one of the best and the absolute worst day of my life. After a rather normal pregnancy I went in to be induced and welcome a beautiful baby boy into this world. After an unremarkable delivery, the silence in the delivery room should've been my first clue. The OBGYN noticed abnormal "sores" on Kruze's head and he had low APGAR scoring. He immediately was taken to the nursery where the pediatrician conferred with Nationwide Children's. Within an hour, he was life flighted to a NICU at Doctor's West. Initially he was monitored, and seen by a plastic surgeon. It was thought he had aplasia cutis. On the second day, I laid him back into his bassinet. He went limp and turned dark purple. Alarms started sounding and he was able to be resuscitated. When it happened again twenty minutes later- we knew things were very serious. When a NICU bed became available at Nationwide Children's we were transferred. Kruze immediately had a brain MRI and an EEG- which he failed. Miserably. I describe the days in the NICU as the loneliest, scariest place I've ever been. Rows upon rows of cribs filled with children of all ages- most on ventilators, all on some type of monitors that alarm constantly. It is loud and then eerily quiet. On his eight of his birth, Cris and I were called into a conference room filled w social workers, neurologists, NICU specialists....and a chaplain. Somewhere in the blur of MRI images, and talk of research, and lots of tears, I remember hearing "It isnt good". I heard "comfort care." "Seizures. Extreme delays". And that night as I sat alone rocking this weak, swollen faced baby my prayer was simply this: "God just let me take him home". 
This is not the way it's supposed to be. 
After many referrals and mandatory CPR classes, we did just that. Kruze came home. For two months I laid on the couch and held him. He couldn't lift his head. If he laid on his stomach, he suffocated in the carpet. His arms would fall to his sides. But then we began home PT. His NICU follow up showed little progress. But we don't do anything on schedule- we "Kruze". He got a stomach virus and got very sick. He had seizures. One was so bad, he was admitted. He lost any control over his left arm and hand for weeks. We kept going to therapy. We forced him to try and do things just with the left side. And over time he got stronger. And as we neared his first birthday, and his peers were taking their first steps, Kruze was trying to sit up. He developed a growth on the inside of his right eyelid that had to be derided on three separate surgeries . I wanted wonderful pictures of his first birthday party but because he had multiple stitches in his eye...this was not the way it's supposed to be. 
And he continued to be slow to progress. He developed a large "bump" on his right temple. After much hesitation, we sought a second opinion at the Cincinnati Children's Hospital. He has since been diagnosed with epilepsy, cerebral palsy, blindness of the right eye, enlarged right brain ventricle, a right sided fatty tumor on his brain, and has undergone a VP shunt placement in July. His official diagnosis of ECCL cannot be made until tissue biopsies are done. Cris and I were looking forward to having our first child together, and having the time and means to travel, to have wonderful experiences with Kruze but this isn't exactly the way it's supposed to be. We improvise. 
Ask any parent of a special needs child, or a child with a noticeable deformity, (or in our case all the above) and they will tell you that feeling that their child is loved, healthy, reaching their potential, and is accepted is the forefront of everything they do. Kruze is loved. Accepted? Not always- especially by strangers. However, our "this isn't good" baby is walking. And somewhat talking. Even with severe brain abnormalities, he is expressive, and he understands (too well at times). The weakest baby helped me gain strength. His disabilities make him even more determined. As we celebrate what we were told would most likely not happen- his second birthday- I realize he is such a gift. By the grace of God, such love and support from our friends and family, his determination....I brought Kruze home, not to die but to thrive. And when I think of the worst part of the worst day of my life.....that was not the way it's supposed to be.
Donate

Donations 

  • Joanne O'Brien
    • $100 
    • 5 yrs
Donate

Organizer

Teresa South
Organizer
Athens, OH

Your easy, powerful, and trusted home for help

  • Easy

    Donate quickly and easily.

  • Powerful

    Send help right to the people and causes you care about.

  • Trusted

    Your donation is protected by the  GoFundMe Giving Guarantee.