The Good

I’ve spent a lot of time giving Carlee’s back story. I’ve told you the bad, the ugly, and I think it’s time for the good. What can she do?

Carlee can walk for up to a minute without falling. This is a huge progression from her worst which was about ten seconds. Carlee can eat baby food and soft foods. She used to bring up everything in her system. Carlee now lives without heartburn 24 hours a day. Carlee can sign more. She can communicate that she wants more food or more of an activity. Carlee sleeps through the night, she did this before she got her new bed. She can hold a toy for up to thirty seconds. She never held a toy for more than two before. She holds and mouths plastic toys. She used to only touch things that were soft and chewable. Carlee can drink from a sippy cup while holding it for the entire time. This is a huge progression from when she would sip and throw, sip and throw, until all her cups were broken and the floor was a mess. Carlee can keep shoes on her feet. She used to hate it. She can go outside barefoot. This would have never happened a year ago, the outside scared her. Carlee can recognize a half dozen faces. She used to have no ‘stranger danger’ and would go up to anyone and cuddle, while cute, not exactly safe. She now has a sense of who(m) she likes. She notices when mommy or daddy or big brother come into a room, and will make noise when we leave. Carlee can tell us when she doesn’t like something, in her own way, versus a standard cry. Carlee can be in a non-vacuumed room and not choke. She used to put every little bit of every little thing she would find in her mouth.

She’s growing. She’s putting on weight. She’s getting taller. Her hair is filling in. Her eyes have light in them. She’s our fighter and out survivor.

Here’s a glimpse of what Carlee can do now:

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Sweet Dreams

Carlee can climb out of her crib. Most three year olds can. However, she has no sense of self preservation. She doesn’t fall with her hands out to stop her. She isn’t aware of her surroundings. And she can flip out of a crib an onto her head in three seconds flat. Seriously, she could win a gold medal at getting out of a crib in the most unsafe way possible. When she got the feeding tube, we were concerned she would pull the tube out at night, or flip over the edge. She started sleeping in a swing. We bought the biggest swing we could find. It was supposed to hold up to forty pounds. It did not. Then she started sleeping in a car seat that was angled in a wooden box, so she could still recline without tipping herself over. She slammed around so hard in there that she broke the wooden box. Popped the sides right out, nails and all. Then she started sleeping in the car seat in the crib. It was tied down so she wouldn’t tip herself over. She has gotten out of the car seat and flipped out of the crib like some sort of baby Houdini.

We looked into getting her a safe crib. The prices are insane. As if special needs parents don’t have to pay more for every single thing for their child, the beds are in the thousands of dollars. We filed with the insurance and they turned us down at every chance. Finally, since Carlee maintained her Medicaid in her adoption, Medicaid picked up the tab. After a three month wait, her bed was delivered and set up today. Here’s a before and after!

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She’s very much enjoying the space and not being strapped into a seat to sleep. In this moment I can hear her banging around in there. Her bedroom is right through our bedroom. She’s even giggling a bit. She’s safe and has a safe place to sleep and even play around in. Just for safety’s sake, I did put tights on her so hopefully, she can’t use her toes to wiggle herself out. I can’t imagine she would, but like I said, Houdini.

Here’s my girl, ready for bed. Sweet dreams little lady!

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A Peek Inside

It dawned on me that you don’t know what Carlee looks like. I put together a few photo grids to show her slow medical decline and her progress since her surgery.

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This is our girl. The 2012 pictures are when she first came to us. You can easily see the decline by the following year. Her hair was falling out. Her eyes were dim. She was in constant pain.

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These photos are from her 3rd birthday. You can see her massive hair loss and how very tiny her arms were. She always had a guard on her hands to try and keep them out of her mouth. Her OCD behavior caused her to suck her fingers until the nails fell off and the skin became macerated.

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And here we are now. Seven months after her feeding tube surgery. She has chub back on her cheeks. Her hair is coming back. Because she is getting such good nutrition, she only sucks her fingers as a soothing mechanism. Just like ordinary children. You can see the light back in her eyes.

In the Middle of the Night

Carlee’s seizures are showing themselves tonight. She wakes up in tears. That wakes me up. There is nothing to be done. There is no help I can give. I can only stroke her head and rub her cheeks until they pass. I do have one thing on my side, on her side. The name of Jesus. When I’m so upset, so angry, that my baby girl has to suffer, I can’t even pray. But, I can use His name. It’s the only thing I cling to, in the middle of the night.

We talked about healing today. I talked about it with a fellow foster mother. The topic came up later in my evening Bible study class. God has the power to heal. Anyone. There’s a fine line between what He can do and His willingness to do it. It sounds harsh. If He can heal her, why doesn’t he? I don’t know. In the waiting, in the darkness, I can pray for her. I can beg on her behalf. I can hope for a miracle (look at what He’s already done). My friend said she told her daughter “Jesus will heal you. It just might not be on this Earth”. I agree. Jesus will heal my girl. She’ll one day run and laugh and talk until she’s blue in the face. I pray I see it. I pray it’s here on Earth. Here in this world. But, I know it might not be. I can’t explain why. If I could explain God, what kind of God would that be, if a measly human could understand all His way?

So in the mean time, I call on His name. When I can’t form a prayer. When my hands shake in fear and anger for my daughter. I call on His name. I still pray for her miracle. I will never stop praying for her miracle. But, I know He has a plan for her, and I can’t wait to see what it is.

In My Dreams

We’ve heard Carlee’s voice just one time. The first night she was here, my husband said “say dada” and she did. That was the first and last time we’ve ever heard her true voice. Many nights a week, she talks in my dreams. She doesn’t carry on the conversations of a typical three and a half year old. Last night she was just baby babbling, like a six month old would. She turned and looked at me and said “hi mama”, I woke up with tears on my cheeks.

We are helping Carlee find her voice. The hope from the specialists is that her brain will ‘rewire’ itself and she can speak again. We don’t know if that will ever happen. We can’t wait around for that moment either. She’s made big strides in communicating since she had the feeding tube put in. She can sign ‘more’ in her own way, but we know what she means. She has a happy head dance when she’s excited about something. She makes a very specific sound when she sees us getting her cup of juice ready. She’s turning to voices more. She definitely knows when daddy comes home. It’s another specific sound. We’re working on a communication board for meal times. Pictures of her food so she can point and tell us what she wants. She’s signed ‘eat’ a few times.

My eldest son signs ‘hug’ for her multiple times a day before he hugs her, he’s desperate for her to sign it to him. As much as I want her to sign her needs to us, I really want to see her ask him for a hug!

For a little girl with no words, she sure has a lot to say!

About Birth Parents

I want to say a few things about birth parents. Our two youngest children are adopted from foster care. In most cases, children are in foster care because they were abused or neglected. In general, social services does not take children from happy, loving, and safe homes. (Yes, it does happen, but it’s rare) Our adoptions were not happy ones. We weren’t handpicked from loving birth parents who chose our family to raise their children. We were picked by the county as the best home for the child in that emergency minute. Our life isn’t about newborn open adoptions or international adoptions, where children are placed by their parents. So my words about my birth parents, may be harsh, may be angry, and when I look at my beautiful babies, I feel they are justified. I am working incredibly hard to be loving towards them. It’s a daily battle. A bout of night time seizures makes my blood boil. It’s hard to be loving towards the person who hurt my daughter. A missed visit, makes my heart sad, that effort is not put forth.

I do not wish to offend anyone who has lovingly placed their child for adoption. That is an amazing sacrifice, to do what’s best for your child, to give them life at all. But, that is not my case, my son’s case, or my daughter’s case. They were removed from their homes, their parents, because of trauma, neglect, and abuse. Their beginnings are sad. The rest of their lives, well, I hope they are amazing. But, they will always know, this isn’t where they started. One day we have to break their hearts and tell them the truth about the people who gave them life. And that breaks my heart.

If my words towards any of the birth parents in my life are angry at times, be patient with me. I try not to speak ill of them, but they are in my life in one way or another. Times come when I am bitter and, well, pissed off at their actions. I will try my best to keep this from happening, but I know it will. It’s all part of our story.

Dreams of Purple

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!