Sunday, June 21, 2009

It's a Bird! It's a Plane! It's...

Kameron my nine year old, is, to me, a superman. Well, maybe a superboy. It's been awhile since I told his story I think, so I'm going to tell it again - hey, it's my blog, so I can indulge right?

Kam was born Kenny in Denver Colorado on January 1st, 2000. Now, before you ooo and ahhh about how cool that birthday is, I want to warn you that he was born THREE months early. Yes, three months. At birth, he weighed a little over one pound. He had a brain hemorrhage that contributed to the calcification of 45% of his brain. That means almost half his brain was turned essentially into bone. He couldn't eat, his optic nerve was seriously damaged from the hemorrhage, his lungs were short, Kenny was a mess.

His mom and dad were encouraged from the get-go to disconnect the life support from little Kenny. They declined. Soon, it became evident that mom and dad were less than stellar parents (I believe they had a fist fight in the NICU), and the courts stepped in with a protective order for him.

Within three months, the hospital declared him well enough to be discharged to a foster home. His first foster mom disagreed. Kenny was supposed to be bottle-fed, yet he wouldn't/couldn't suck; he still had significant breathing difficulties, and was on oxygen, but it didn't seem to be helping. She was concerned about his listlessness, his pallor. It seemed to her that the hospital was trying to discharge him so that he might finally die. She wasn't into that happening on her watch. The social worker must have agreed with the hospital, because she didn't want him back in the hospital, and so Foster Mom #1's agency moved Kenny to another home. Thankfully, this Foster Mom was newly licensed because she'd just left her former career as a NICU nurse.

She took one (okay, maybe two) looks at Kenny and whisked him off to Children's Hospital in Denver. There he was put on a feeding tube and a ventilator. Eventually, he had surgery for his retinopathy (eye problem, not the optic nerve damage though), and was diagnosed as having bronchial malaisa. Basically, his bronchial tubes weren't formed enough for him to breathe.

He stayed at Children's for the next year. He grew, and his lungs matured a bit, but not enough to get off the vent. Parental rights were terminated (his mom and dad stopped visiting shortly after the ventilator was attached to Kenny's throat via a tracheotomy). And Kenny finally stabilized.
Here I come. Crazy Foster Mother to I don't remember how many at that point, and really wanting a baby. Now, I guess that most people, when they think of a baby, don't think of a baby with Kenny's special needs. Actually, I didn't either. But from the moment I saw him in Denver, I knew I wanted him.

Anyway, long story short, Kenny came to live with us. It took many weeks, months maybe, to get the house and us ready. We had to hire a private duty nursing company to take care of his still significant medical needs, occupational, physical, and speech therapists to try to get him functioning at any level he could achieve, a special chair was ordered that would hold both Kenny and his ventilator and two batteries for our trips out of the house. And on and on. We had a ton of prep work for this little boiyo. In the end, it took us a little more than three years to get him off the vent and the feeding tube, and right after that, his lungs were declared healthy enough to be off oxygen completely. He was doing terrific. Better than anyone expected, especially his doctors.

August of 2003, Kenny became Kameron, and an official member of my little brood.

Then, when he was about to turn five, all heck (and I mean the other word) broke loose. It was Halloween, and Kam had been sick all day. It looked like the stomach flu, which made sense, because several of the other kids had been sick. But around dinner time, Kam had a grand mal seizure and I called 911.

Weeks in and out of ICU in Colorado Springs, and no one knew what was wrong with him. Most of the professionals agreed that he'd just begun having a seizure disorder. After all, look at his CT - look at all that brain damage. I disagreed. Kameron had never shown any hint of seizure disorder, and even so, the way he was seizing didn't look to me like a typical disorder.

Eventually, some technician saw a shadow on an MRI, and it was decided he had an Arterio Venous Malformation: an AVM. Some of the symptoms were migraine headaches, seizures, possible hemorrhage, and stroke-like features. We almost lost him several times.

More long story short, some serious brain procedures - like thirty or thirty-five - later, and one brain surgery last August, it looks like maybe the AVMs (turned out to be a ton of them) are shut down and not growing anymore. Yay!

Now nine and about as healthy as he's ever been, Kameron is finally getting a chance to grow and develop. He is in a wheelchair, but can use his legs, and if the medical equipment powers-that-be could hurry up a bit, he will soon have a walker to use. The idea of him standing and walking on his own is beyond thrilling.

Also, this little boy who wasn't supposed to live, then wasn't supposed to ever talk or eat or have any signs of intelligence, not only talks (a LOT), he remembers people and their names, he sings a ton of songs, he remembers scripture verses, loves basketball, and on and on. AND he is learning addition (ask him what 3+5 equals and he will tell you 8), and just the other day I posted a pic from my phone on Facebook showing Kameron reading on the toilet. Now, this wouldn't be extraordinary for most kids, but Kam, with almost half his brain severely damaged and about nine years behind the rest of the pack, was actually reading the words - all of them - in the book. Not bad for being "blind".

I guess the moral of his story is that you just can't count anyone out. No one told Kameron he was supposed to die - many times over by this point. No one told Kameron he couldn't read or learn math. No one let him know he shouldn't be able to dribble and shoot a full sized basket ball. He just keeps on going. Who knows where he'll end up? I can't wait to find out.

As always, thank you so much for reading. I know you have your choice of blogs, and am grateful mine is one of them. Much love.


  1. Anonymous11:00 AM

    I am sooo proud of Kameron and I am also proud of you mom, for taking a chance on him and giving him the life that he deserves.. I honestly feel that if it weren't for you in his life he may not be here today... he loves you mom, we all do... LOVE YOU!!

  2. This story is amazing. Thank you for not giving up on Kam. Too many people would have walked away. You are an amazing person & a wonderful mother to him. An inspiration to all.

  3. Thanks, Mare (and Elesha!). Kam's story isn't unique, though. I know many foster parents of "Special" kids and "Typical" kiddos with awesome stories to tell.

    Unfortunately, most of us only hear about the tragedies...stories about persistence and stubborn dedication to these children (and to bio-kids with high needs), don't make the news very often!