Friday, January 19, 2018

Our Hard Road

I wish I could say that our hospital days were fruitful.
I wish I could say that our little girl is now seizure free.
I wish that I could say that the pinching, hitting, angry little girl is a thing of the past.
I wish.
It's been a brutal few weeks.
 Our hospital days didn't get us any closer to finding the right drugs to ease Mary's seizures, but it did provide us with a diagnosis.
I was there alone when the team of doctors came into the room. I was there alone when they gave me the good news/bad news scenario. Mary has a form of epilepsy that doesn't usually affect cognitive development. That was the good news. Mary has a form of epilepsy that is extremely rare and extremely hard to treat. In other words, expect that she will never be seizure free.
How do you hear that with a team of doctors standing there watching to see your every reaction? UVA is a great teaching hospital and is the best hospital in Virginia for epilepsy. Mary's neurologist admitted her to UVA, but once you are admitted you are turned over to the team and your regular doctor hangs in the background. I'm grateful for the team of doctors, but at times like those I would have rather had our doctor sitting my husband and me down and having a quiet heart to heart.
I didn't cry.
I asked intelligent questions and responded with toughness and fortitude.
But my heart was bleeding inside.
How can I stand there and listen as they tell me that we need to accept that she will probably never be seizure-free?
It didn't help that little girl spent her entire time at the hospital taking out all her anger and frustration on me. We were on 24 hour monitoring so everyone in the EEG room got a front row seat as she pinched and screamed and yelled at me.
She was a tad better when Papa was there but still on total edge.
Having her hooked up to EEG monitoring just made the stress even harder to bear. Each time she had a seizure we had to press a button, tell them over the intercom that she had a seizure and a nurse would come running in the room. It became a bit comical to have the nurse running in and then in again and in again in a matter of a few minutes. After the first night of that crazy, we were able to talk them into just letting us push the button and tell them over the intercom that she was okay.
Our time in the hospital was disheartening. We came home with a little girl who was emotionally wrecked. Her behavior tanked there, and we have been struggling to get our sweet little carefree girl back. The medicine she is on has not helped that struggle. We are now in the process of once again changing her meds in hopes of getting rid of the one that has affected her behavior.
One of the biggest learning curves we have had on this journey with Mary is that epilepsy medicine is hard core stuff. You can't just change medicine out at will. It is a long process to add a drug or remove a drug. Each dosage change affects our little one in a multitude of ways. Some make her dopey and zombie like. Others make her hyper and unable to focus. She has weeks where she won't eat anything and weeks where she stands and begs for food all day long. The one drug we are backing off on causes rages in some children which we have definitely witnessed.
But we have also learned that Mary can't be without seizure medicine. We were ramping down her drugs at one point and watched her seizure level skyrocket. She has a serious form of epilepsy and going drug-free is not an option.
Finding the right treatment for Mary is a long-term process. Yes, we are talking seriously about CBD oil. Yes, we are talking seriously about putting her on the Ketogenic or a similar diet.
The diet is actually the best treatment for her type of epilepsy.
It's also the one that causes us the most anxiety.
Our little former orphan is typical of most orphans. Food is a HUGE deal to her and when we look at the list of foods she can't eat on any of those diets we just look at each other in total dismay. Those are her happy foods. The foods she rejects at most meals; those are the main foods on the diet.  I honestly have no idea how we will implement a diet with her, but we know that we will eventually have to cross that bridge and wage that war.
For now we are muddling through our days. We have few moments right now where we get to see Mary smile. Most of the time she is frustrated, angry or whining. We took her sledding which solicited a few giggles amidst her fussing. She's happiest outside so we try to give her as much outside time as we can.
I wish there were easy answers and quick treatments and fast fixes for our little one.
I wish I didn't have to wear a clicker from my belt loop to count her seizures.
I wish I wasn't the target of her frustration and anger.
I wish I could say that I always react to her with gentle words and great patience.
I wish.
It's a hard road.
We are deep in the trenches with her.
Our little boys are hanging in there, but it hasn't been easy for them. Aaron has watched us struggle in the trenches before, so he is less bothered. It's a whole new ballgame for John who is used to being the focus of all of our time and energy. He's doing a whole lot of watching and processing. We are hoping that through this he will also do a lot of maturing!


It's a hard road.
We are grateful that we have a neurologist who does care and who is actively involved in helping us find answers to Mary's epilepsy. He has not written her off and has made it clear that his goal is seizure free.
That's our goal too.
Seizure-free for our littlest!


Thursday, January 11, 2018

Hospital Woes

Just popping in to say we are hanging out at the hospital for a while.
We aren't sure how long the while will be and little girl is not really liking her new reality.
She's hooked up to an EEG machine and we have a roommate in the next bed (an itty bitty baby) which means she is confined to a very small living space.

We are making the best of the situation armed with her Kindle, non-stop cartoons and a backpack full of stuff to keep the cuss words at bay and the pinches and kicks to a minimum.  Hospitals don't necessary bring out the best in a newly adopted little girl!
Prayers appreciated as the doctors try to figure out the best plan of action for our little one!

Tuesday, January 9, 2018

Bits of Time

Yesterday afternoon the temperatures rose just enough for me to bundle up little girl and send her out on the porch with her big brother. We stretch a gate across the stairs so she is as safe as she can be. I sat in my office and listened to the two of them playing and laughing and chasing a ball all around the porch.
Every five minutes or so she would call out to me to come. So out I would go, freezing and cold to see whatever it was that I must come see NOW.
I cherish those moments of laughter because honestly, right now, things for me are a bit rough in our little house on the hill.
We are still adjusting to our new norm, and I am probably struggling the hardest with the changes. Lack of sleep, the stress of Mary's seizures, behaviors that drain every ounce of reserve out of me, trying to scratch out minutes to get any work done, keeping house with three cooped up tornadoes, cold weather that won't let up.... I'm feeling a bit fried.
It's amazing what sitting and listening to laughter does to the soul.
For the hour and a half that they played on the porch, laughing and enjoying each other's company, I felt refreshed. It was a healing balm on my spirit.
Despite being in constant contact with her doctor, we are still no closer to decreasing Mary's seizure activity. We are waiting on genetic test results, have an MRI scheduled in the coming weeks, are changing meds and adding as many natural supplements as we can. We have another appointment this afternoon. We are grateful that we have a doctor who will call us on the phone, is actively involved and is trying his hardest to help Mary. We are also grateful to have another doctor who has been a total God-sent who is also actively helping us with our little one. Yes. We have considered alternative options and are in the researching and learning stage.

Emotionally, Mary is doing amazingly well. She is bonding to us and is figuring out how to wrap every single person in this family around her little finger!

The meds she is on affect her behavior, moods, sleeping, eating and intestinal track. Poor babe lost her appetite for about 3 weeks. Mealtimes were a nightmare as we desperately need to get her to eat certain foods to keep her system moving, and she rejected everything offered. Thankfully, over the last few days her appetite has returned and we are no longer having epic battles at meal times.

She takes her seizures in stride. Every few minutes she has one. But each time she just gets right back up and goes back to whatever it was she was doing. Her seizures are like hitting a pause button. Once over she gets right back on task. She never misses a step.
That's not to say that they don't hurt her. They are brutal on her body. She hits the floor, drops against furniture, slams into walls and falls off chairs. But, unless we were to put her in a strait jacket, or kept her in a padded cell, or locked her in a chair all day, there is little we can do to fully protect her. Her seizures are just too fast and unpredictable.
So we try as hard as we can to keep our dancing, twirling, singing little girl as safe as we can without tying her down.

She's a funny little girl. Her language hasn't quite taken off yet but she is understanding more and more of what we are saying. She has added a few English words to her vocabulary and a bunch of signs to get her point across. She is holding hard to a few of her native words, including a string of cuss words that come in quite handy when things don't quite go her way.

We know that one day we will look back on this season in our lives with fond memories. Until then we are hanging by our toes and finding pleasure in those bits of time that pop up unawares.

Like the laughter of two children swinging on a hammock together and calling for Mama to come and see!


Monday, January 1, 2018

I Underestimated

Lesson for this New Year's Day...
Never underestimate the power of prayer, the love the Lord on High has for orphans and what a handful of advocates can do.
I did.
I underestimated.
I've been yelling for several weeks and did see God moving but yesterday - when 38 babes still had not reached the 1,000 wall and it was evening and no one even seemed to be paying attention... I threw in the towel. This exhausted Mama went to bed. I told Rob it was the first time in 7 years that I was not going to stay up till the end. We are still in the trenches and every minute of sleep is precious right now, and I didn't think I could handle not seeing those babes make it over the wall. I didn't want to be discouraged.
So I went to bed.
I underestimated God.
I missed the party.
I missed the rally that got every single babe over the 1,000 wall.
I am NOT sorry for the sleep last night.
I am deeply sorry that I missed watching God at work in hearts.
I am ashamed that I underestimated the power of prayer, God and advocates!
If you were one of those who gave.... THANK YOU!
Each child has 1,000 in their grant account. That 1,000 is going to be a HUGE blessing to their future Mamas and Papas. It will be one less 1,000 they need to raise to bring their babe home. For many unconvinced parents who struggle with the cost - it is a sweet aroma. A tiny bit of encouragement. A gift that helps push them over that mountain.
What we do matters. That tree. Those babes. We are their voice.
You are their voice.
You who rallied last night ....  You are Mighty Warriors!
And for those families who found the 8 children on the tree.... You have our prayers! If anyone wants to give to the families of Bruno and Joey - they were the only two who didn't make it over the wall. I know their families would deeply appreciate your donations to their grant accounts!