Purple has been my favorite color for as long as I can remember. I painted my high school room purple. I saved that gallon of paint through three pregnancies, hoping to use it in a nursery. Alas, all I got was a very purple bathroom. I had put away my purple dreams, we had tried a few avenues and it seemed that I’d be in a sea of blue for the long haul. Now, I love my boys. My crazy, active, dirty, car loving boys. My blue. I still longed for purple.
Enter our leading lady. Carlee came to us a twenty month old ball of nervous energy. We learned very quickly that her development was not typical. There were doctors visits, referrals, and unethically long waits to get into specialists. In May of 2013 we finally got in to a developmental pediatrician. The news was not good. We were hoping for a diagnosis of autism. A strange thing to hope for, but that was the hope. Instead we learned our princess had brain damage.
I feel conflicted both wanting to explain Carlee’s health issues and protect her. I decided to share with care. I think it’s important to share her story, but I’ll be keeping the most private of details, private. Carlee’s start to life was traumatic and started way too early. She was between 26 and 28 weeks gestation. She wasn’t cared for in the womb. Her biological mother (BM) didn’t care for herself or her baby and that baby paid the price. Including the hospital, we were Carlee’s fifth home in twenty months. Her BM walked out of the house she was living in, leaving her daughter behind. Carlee was with some amazing family that knew they couldn’t care for her with the needs she had. They decided to place her in foster care and that’s how she came to us.
Carlee was born with multiple issues. One of which caused damage to her brain. The virus she was born with, courtesy of her BM, had attacked her brain. The way the virus works is awful. It hides in the nerves, knowing the body won’t attack its own nervous system. It hibernates until it feels like attacking, without warning. When Carlee was about a year old, it attacked. She wasn’t cared for properly in the home she was at, at the time. The virus waged war in her brain, taking her speech as its captive.
Carlee does not speak. That certainly doesn’t mean she doesn’t have anything to say. We just can’t hear it in the typical way. When the virus stole her speech it left a parting gift. Epilepsy. Carlee has Lennox-Gastaut Syndrome. This is a severe form of epilepsy. It changes patterns. She started out with silent seizures. Blank stares. This is what prompted a visit to the neurologist. During a scan they learned she was having upwards of twenty seizure events an hour. The doctor compared it to watching tv with someone changing the channels every twenty seconds. You wouldn’t grasp much of the content of the show. Our girl was bewildered by life. It was loud and bright and flickering. Her silent seizures evolved into atonic or drop seizures, she just collapses. Unfortunately, the nature of LGS is cruel. It seems once we get one type of seizure under control, it flips over on us, and does something new. It’s a never ending battle for her to be pain free. The saddest of things is seeing her clutch her head in pain and having no way to help, and knowing that it was so easily preventable.
On top of the seizures, the damage to her brain also caused rumination. You may have heard this term while talking about cows. Basically, she was able to bring her food up at will, and swallow it again. Or spit it out. Technically there was nothing “wrong” with her GI track, it was a mental illness. We tried a child psychologist, but that was a bust. She needed to be able to follow three step commands for the therapy to work. She was losing weight, getting skinner by the day. Her hair started to fall out. Her finger nails were brittle and would break off. She developed a habit of sucking her fingers. Not in a normal self soothing way, but in a obsessive way. Her nails were being sucked off her fingers. The skin was so macerated, that the doctor compared them to being repeatedly hit with a meat grinder. We tried every thing under the sun and moon to get her to stop. Nothing worked. No doctor would listen to me, that something needed to be done. She was wasting away. Her development slipped from 12 months to 0 months, mentally she was a newborn with the strength of a three year old. She couldn’t even walk anymore, two or three steps and she’d fall.
Then came the adoption papers. The day I had those in my hands, I marched into GI and demanded somebody do something. This was no way to live. Even if it was mental, she couldn’t help it and it needed fixed. Within a week, we had a surgery date. In July 2013, Carlee was put on a GJ feeding tube with 24 hour continuous feedings. The formula went in through the J portion of the tube, the jenunal. This meant that the formula was bypassing her stomach all together. There would be no food in her stomach for her to bring up. It worked from the first feeding. Within a few month, her hair started growing back and she started putting on weight. We visited a feeding clinic in October of 2013, they gave us some hope. They also explained that the rumination was a self defense mechanism. They think that she was fed thickened formula and baby food too early for her system. The gagging was her way to keeping herself from choking. This made us so angry, that it all could have been prevented by proper care.
We are now in February of 2014. The feeding tube has been nothing short of a miracle. To look at her, you would never know it’s the same child. Her complexion is clear, her fingers are smooth, her hair is thick, and she’s getting a little pudgy. It’s been a long battle. But it’s one I think we’re going to win. With the help of amazing therapists, we’ve managed to get Carlee eating food again. Right now, it’s just baby food and soft granola bars and bananas. But, she’s enjoying it. She relearning how to chew properly and shallow. There are times when she still wants to ruminate, but it’s 99% better than it was. She can wear her cute outfits without ruining them too! She is only on the feeding tube at night. During the day she is free to run and play.
Carlee has a long fight ahead of her. She uses a medical walker to help with her balance so she can enjoy being upright. She’s beginning to play with toys with enjoyment. She no longer hides from the world, she enjoys being outside for short spurts of time. She is getting a medical crib, so she can sleep safely and not have to be in a car seat at night. Her seizures are still changing. She has to wear a helmet at times. But, our girl is fighter and a survivor. Medically speaking, she should not be here. She should not have survived the virus in the womb, or at birth, or at a year old. Three times she’s defied the odds. This is her journey, this is her story, told by my words. I hope I do it justice. Oh, and the color for Epilepsy Awareness? It’s purple!