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!