Thursday, April 19, 2018

PLEASE DON'T FEED THE BEAR!

 
 
About an hour from us is a wonderful zoo! When you enter the zoo you have the option of buying a cupful of food that you can feed to the different animals. We love the up close and personal that feeding the animals gives you. It takes a lot of bravery to hold food out in your flattened hand for a giraffe to eat!
 
The food is specially designed and healthy for the animals to eat.
 
They love it so much that sometimes they bypass your hand and just go for the cup.
 
It's a fun, lively experience that we love doing with our children.
 
But don't feed the bears.
 
 
 
Nope. They are behind the glass enclosure and you can only look.
 
 
 
We have a bear in our house.
 
An adorable little bear who cannot be fed - no matter what she tells you.
 
 
I don't care if she walks up to you with her adorable little hand out and begs for the snack you are munching on...
 
Please, please, please... don't feed our bear.
 
We are deep in her diet and it has been unbelievably good.
 
Before we started the diet, little girl was having up to 150 head slamming seizures a day and 50 or more smaller seizures that we weren't even counting on our counter.
 
Four weeks into the diet and she is no longer slamming to the floor.
 
Did you read that??
 
That awful pink helmet with the face guard to protect her sweet little face is now sitting quietly on our dining room table. Her last head slamming seizure was the day we left the hospital but we were too shocked and nervous to even say anything.  I mean - seriously??? One day she is slamming to the floor in front of the nurses station scaring them all silly over and over again, and the next day she is running up and down the hospital hallway without falling one time.
 
It's been a crazy breath-holding bunch of weeks watching her and marveling at the change. As the seizures have eased, our little girl has been waking up mentally. Two months ago she couldn't focus for more than 30 seconds at a time. Now she is building puzzles, looking at books, coloring, playing happily with the boys and babbling up a storm.
 
She still is having seizures. We are not completely out of the woods. But her seizures are smaller and though no-less concerning, a lot less dangerous.
 
What made the difference?
 
Three factors.
 
About 8 weeks ago we started her on CBD oil.
 
About 7 weeks ago we started her on a modified Ketogenic diet and then 3 weeks later started the full Ketogenic at the hospital.
 
Ever since we have known about our little girl and her epilepsy we have been praying.
 
Prayer. Diet. CBD.
 
It's not important which one is working.
 
What matters is that our little girl/bear is coming out of a terrible time and we are committed to keeping her that way.
 
The diet is HARD.
 
We spend an average of 90 minutes a day prepping and stressing over her food.
 
Every single morsel that goes in her mouth has to be weighed. She has STRICT menus that we have to follow. We have a dietician who has to approve any changes or additions to her menus.
 
 
 
It's a ridiculously unhealthy diet.
 
I mean seriously... the amount of fat she is eating each day is absurd.
 
Would you like a bit of Keto bread with your butter???
 
 
Who spoons oil into their child's mouth as part of their dinner??
 
Who cuts a half a strawberry into tiny thin slivers to make it look like she is getting a lot of strawberries?
 
Who mixes nuts in a bowl and adds a tablespoon of butter chunks and calls it cereal?
 
Who mixes mayonnaise and ranch dressing together and serves the mixture as a side dish?
 
We call it the mayonnaise diet for good reason.
 
Thankfully, she LOVES the fats. She eats the butter chunks whole. She willingly drinks the oil. She loves her mayo-ranch side dish.
 
It's our saving grace!
 
But it's hard.
 
She loves the fats but she also wants what we are eating.
 
It is mentally hard on us as we try to find ways to keep her from grieving the foods she cannot have.
 
When the boys get their big bowl of fruit for dessert with a small squirt of sweet whipped cream on top... she gets a massive bowl of unsweetened heavy whipped cream with a two tiny slivers of strawberry on top.
 
When we have our thick, juicy, pizza, she gets 12 pieces of pepperoni with a tiny drop of pizza sauce and a tiny bit of shredded cheese.
 
For Easter she got her 95% cocoa bar which she can eat (in tiny portions) with heavy whipping cream and the boys got one chocolate bar each. The rest of their baskets had small toys, books and audios in them.
 
We try to match what she is eating with what we are eating.
 
We are mindful and careful and vigilant but that doesn't mean there aren't periods of tears and sorrow. Hamburgers and French fries meals are sad affairs when French fries aren't sitting on her plate.
 
She doesn't understand the diet.
 
But she feels a thousand times better.
 
So even though she can't put it into words - we are fairly certain that she understands enough to know that what we are doing is good for her.
 
She isn't going hungry.
 
For those worried about our bear and whether she is going to starve on this diet - never fear - she gets 5 meals a day. Three full meals and 2 snacks. The amount of calories she consumed before the diet are exactly the same as the amount of calories she gets now. She has not lost weight and even though she is eating an exorbitant amount of fat each day, she is not gaining weight.
 
To balance out the unhealthy parts of the diet... she gets to consume a bucketful of pills each day. Everything that the diet lacks is covered in that bucket.
 
We can't cheat on this diet.
 
Not one tiny cheat.
 
We can't let her have a single goldfish cracker. Or a bit of candy. Or a cookie.
 
Any of those foods and a thousand more could throw her out of ketosis. Right now her body is burning fat instead of carbs. This is GOOD. This is the purpose of the diet. They don't understand why burning fat helps with seizure control but it does. If she gets an uncalculated carb she could be thrown out of ketosis and have worse seizures than before. We have been warned. Over and over and over again. 
 
We are vigilant. Everyone in the family is well aware of what we are doing. We have rearranged our entire kitchen for this diet. Her food is separate from ours. We work hard not to leave food out on the counter that would tempt little girl. We are careful. But out in public - where people don't understand - it is going to be so much harder.
 
Food is a way to show love. It's something we often share naturally.
 
But not for her.
 
You can't feed her.
 
No matter how cute or desperate she seems.
 
If she is with you in school or drama or church or wherever... please, don't feed her.
 
Please, please - don't feed our bear.
 
 
 
 
 
 
 

Friday, April 6, 2018

Little Girl Lost

 
Last Saturday we crossed the mountain to spend the afternoon with Elijah for our celebrate Rob and Elijah birthday weekend.
 
Little girl didn't know exactly where we were going and why, but she knew we were visiting her favorite Elijah and that was good enough for her. When she saw him walking across the parking lot towards us she took off running and threw herself into his arms.



Pure sweetness...
 
With three littles in tow... we decided to do some fun park hopping and check out some Harrisonburg playgrounds.
 
 
The first one had a great playground but an even cooler hill that was just right for climbing and rolling! 
 
 
The second park... it had a massive wooden castle with so many ins and outs and layers and tunnels and ramps and passageways that it was perfect for a great game of hide and seek.
 
Until we lost little girl.
 
Gone.
 
I was close to panic until Rob called out that he had found her.
 
Huge sigh of relief.
 
She was found.
 
I ran over to where she was and decided I would stay with her like glue. To get to her, I had to duck under a section but once I did I called out her name so I could cement myself to her side.
 
She giggled and ran away. fast. A red balloon bobbing merrily in her tight little fist.
 
She didn't own a red balloon.
 
I looked down at a little girl who was staring up at me with tears in her eyes.
 
Did my little girl just steal your balloon?
 
Yes, she whispered.
 
I looked back up and saw that my little red ballooned girl was gone. Vanished. I ran through the section she had just passed through, but she was nowhere to be found. I turned down passageways and cried out to Rob that I had lost her, again.
 
We looked.
 
We called.
 
In a matter of seconds she had disappeared.
 
I've never lost a child that fast.
 
All five of us started looking. We spread throughout the entire castle. Calling and looking.
 
She was gone.
 
We looked at each other in despair.
 
Where in the world could she have gone?
 
Our eyes began to scan beyond the castle into the rest of the park. It was huge. Where could she have gone?
 
Until a couple called out - did she have a red balloon?  Yes. Yes.
 
They pointed in the direction they had seen her running. Far in the distance was a pavilion.  Rob took off running. I gathered the little boys and with Elijah, we watched and waited.
 
Huge waves of relief swept over me when I saw Rob reach down and pick up our little runaway, still clutching that stolen balloon.
 
I wanted to hold her forever and wring her little neck.
 
We walked her back to the little girl and she unhappily handed over the stolen treasure.
 
Our castle time was over.
 
Little girl spent the rest of the day holding Mama's hand!
 
After a lovely dinner together we bid farewell to Elijah and headed for home.
 
 
At John's request, we stopped at the top of the mountain and checked out the view.
 
 
 
I'm glad we did.

 
I not only got some precious pictures of my three littles...
 
 
 
I  got this gem with their Papa.

 
Precious, precious!
 
 

Sunday, April 1, 2018

From Our House to Yours

Happy Easter...
 
 
He is Risen from the dead.... just as He said!
 
And that has made all the difference!

Monday, March 26, 2018

Transformation

Three months on hard, mind-altering drugs made for difficult relations in this family.
 
How can you even consider playing with someone who acts like a hostile drunk?
 
 
Four weeks off hard, mind-altering drugs makes for a much more pleasant little sister.

 
It means her brothers actually want to play with her.


It's only been in the last few days that they have realized that she's not going to bite their heads off and is rather a fun companion.

 
The sounds of laughter and seeing the three littles truly enjoying each other has been a pleasant gift these last few days.

 
We are loving the transformation.


 
Laughter is good medicine!
 
 
 

Thursday, March 22, 2018

Ketosis!

Three weeks ago we made the decision to put Mary on the Ketogenic diet. It's a medical diet and needs to be monitored carefully.  To do the full Keto diet a child needs to be admitted to the hospital.
 
 
 
We knew this and did not try to start her on the diet but we did test foods with her over the past few weeks. We discovered that our little girl LOVES all the fats required. She is a lover of mayonnaise and sour cream and ranch dressing. She LOVES drinking the heavy cream!
 
So over the last few weeks we have been giving her the fats and cutting her carbs.
 
When we arrived at the hospital... within a day at the hospital little girl was in mild ketosis. By Wednesday she was in full ketosis.
 
WOO HOO!!
 
She gets the reward for getting into full ketosis the fastest!! 
 
They have never had a child who loves mayonnaise as much as she does.
 
Her blood levels have been excellent and she is tolerating the full diet well.

 
 
That means that we get to go home today!!!
 
WOO HOO!!!
 
It has not been a bad experience this time around. Little girl has been amazing and yesterday the little boys had off from school because of snow, so they spent the day hanging out at the hospital.
 
 
But sleeping at the hospital isn't the easiest (for me) and little girl and I really really want to go home!!
 


 
I won't lie. This diet is hard. Even though she loves the fats on the diet - she is not a fan of the limited choices she is being given. No matter how much you dress up what is on her plate - the reality for her is that she can't eat her favorite foods. And the harder reality is that she has to see us eating foods she cannot eat.
 
On Wednesdays, volunteers provide free lunch for the families on this floor. It is a HUGE blessing because buying food at the cafeteria is expensive and having both boys here yesterday was going to cost us a pretty penny.  So I took the boys down and filled up a tray full of sandwiches and chips and cookies. It broke my heart knowing I could not give the same food to my little one. While she dipped her chicken and beans in mayonnaise with little gusto (she loved the mayo but was not a fan of the chicken and beans), they chowed down on sandwiches and chips and cookies. She cried. Rob and I wanted to cry with her.
 
It's not realistic to shield her. They need to eat. They can't hide their food from her and we don't want to feed her separately from the family. We will absolutely do our best when we are at home to make her choices of food as enticing as we can. But she can't eat many of the same foods as the rest of the family. It's a cross she will have to bear. It hurts our hearts to deny her food.
 
But seizure free is our goal. And this plus the CBD oil is our best hope.
 
It isn't going to be easy but we are committed.
 

 
We are heading home and gearing up for the long haul.
 
We have been told that we may not see any results from the diet for at least 3 months and to expect to be on it for 2 years.
 
The long haul!!
 
Step one is over.
 
Ketosis.
 
Thank you, Jesus!
 

Tuesday, March 20, 2018

Testing and Measuring

Little girl and Mama are hanging out at the hospital this week.  Papa's coming when he can.
 
 
Melatonin mellowed her out last night after a busy busy day of admission and blood work and seeing lots of people in and out of the room and a crazy meal that included a LOT of cream cheese spread on roast beef.
 
We were granted a PRIVATE room which is a total blessing. Being stuck at the hospital all week is hard enough without having to share a room.
 
Why oh why do they make hospital rooms with so many LIGHTS in them? Between being woken up to get her poor little fingers poked, we struggled to sleep in our brightly lit room. There are lights on all the monitors and machines around the room and with the light pouring in from the hallway - we might as well have not even turned the lights off.
 
So Papa was commissioned to bring duct tape and a towel so we can block the light coming in from the hall.
 
Despite sleeping rather pitifully last night, little girl woke up with a smile on her face.
 

This is a totally different hospitalization from last time. Two months ago her drug-induced raging sent everyone running from our room. This time I am having a hard time keeping the staff from wanting to take her home! It's been a challenge to keep well-meaning people from picking her up. She has no sense of danger and will just willingly go with anyone.


 
It's a week of training and testing. Testing for Mary - which means lots of blood draws and finger pokes and urine tests to make sure her body is handling the diet well. Testing foods - what she likes and doesn't like. What works and what doesn't. For us - training. Each meal requires exact measuring. Every meal has been proportioned out and we have to make sure to measure exact proportions. It's a bit daunting. There is no guess work and absolutely no deviation. If we want to add a meal we have to submit it to the dietician for approval. We have to learn how to do the finger pokes and urine tests. Did I say we have to measure everything to the nth degree?
 
She's doing well. She hasn't liked all the foods but she's been pretty good about eating what we stick in her mouth.The finger pokes are upsetting - especially in the middle of the night. But she's starting to get used to them. Thankfully, we won't have to continue the nightly pokes when we get home.
 
And the best part for her is that she doesn't have to be contained in the room. So we can freely run up and down the halls, singing and shouting. She can play in the toy room. She can wander around our room looking for trouble. All those machines that are in here... they have lots of tempting buttons to push!!
 
It's the beginning for us of a two year process. I won't lie. Measuring every single gram of every single piece of food that goes into her mouth for the next two years feels a bit overwhelming right now. But if it means seizure relief then we are all in.
 
Thank you to so many of you who have sent words of encouragement and prayers. We appreciate each one. Knowing we have people praying us through this week and beyond makes it easier to endure!!
 

Wednesday, March 14, 2018

Choices and Changes

Two months ago we were in a very dark place with little girl. Seizure medication had taken her captive. She couldn't focus. She was violent. She was miserable.
 
Her seizures were well over a hundred a day.
 
We were despairing on so many levels.
 
Seizure medicine isn't something you can just start and stop willy nilly. It's a slow process to start the drugs and an even slower process to wean off the drugs.
 
We gave little girl her last dose two weeks ago.
 
We despaired two months ago. We wondered if the sweet child we brought out of the orphanage would ever come back. It was a dark dark time.
 
She's back.
 
 
She's back to her ornery, little, cute, happy, get into trouble, seven year old, toddler-self.
 
She wakes up smiling and loves life.
 
She's not perfect. She wasn't perfect before. But her brain is no longer being fried by drugs that did nothing except mess her completely up.
 
Thank you, Jesus!
 

 
 
When your child has as many seizures a day as little girl and everything being tried is not working, you come to a point where you have to think outside the box.
 
Trying another round of drugs just made us want to vomit.
 
We came to the hard conclusion that conventional medicines are not going to help little girl's seizures.
 
Almost three weeks ago we started her on CBD oil.
 
Then, with our first doctor's blessing, we transferred to a new doctor who will be overseeing Mary on the Ketogenic diet.
 
Big choices and changes.
 
The CBD is easy. We give her two doses a day and just have to time the doses so that she isn't getting them within two hours of her other meds. She is still on one seizure medicine and we have to be careful that the CBD oil isn't interacting with that medicine.
 
The diet... not so easy.
 
It's a huge deal.
 
I fly to Texas tomorrow for the Great Homeschool Convention in Fort Worth. I come home on Sunday afternoon and on Monday Mary will be admitted to the hospital and will start the diet. She will be in the hospital for 4-5 days.
 
We are doing the Classic Ketogenic diet. Severe epilepsy means no shortcuts for little girl. There are modified diets out there that would be easier to do but after much discussion we made the choice to go all in.
 
We have spent the last few weeks getting ready for this big change.
 
Little girl has been slowly switching from a mostly carb diet to a mostly fat diet. I call it the mayonnaise diet. It's a very strict diet that involves weighing foods and counting carbs, proteins and fats. She will be on a 4:1 ratio. For every one gram of carb (protein and carb combined) she has to eat 4 grams of fat. Most fruits, potatoes, rice, pasta, sugars and more are all too high in carbs to be allowed.
 
For the most part she hasn't minded it. We are working hard at putting food on her plate that she enjoys. And we are easing her into it slowly.
 
It's harder on us. It hurts our hearts to have to deny her foods that she absolutely loves. It hurts to know that in a few short days - the foods that her brothers get to eat will be off limits to her. We aren't putting our entire family on the diet. It's not realistic. We will be removing some foods and making changes in how we eat as a family. We will be rearranging our kitchen and pantry to get foods out of reach. We will be working hard to find alternative foods for her to eat. We've bought recipe books and are experimenting with this and that.
 
It would be a bit easier if she could communicate and we could explain to her why we are doing all of this. Right now she is too new to the English language, has lost too much of her native language and honestly is too emotionally little to explain it even if we didn't have the language barrier.  She will just have to trust us. And we will have to work hard to find ways to make this diet as appealing as we can.
 
CBD and diet are not quick fixes.
 
We've heard the miracle stories where someone starts CBD and in a matter of days they are seizure-free. We've heard the same stories for the diet. Those are miracle stories. Almost three weeks on CBD and two weeks on a modified Ketogenic diet and little girl's seizure level is still ridiculously high.
 
We've been told to expect to be on the diet for three months before seeing any results.
 
We've been told it takes weeks and months for CBD to build up in the system.
 
We are in for the long haul.
 
But it's okay.
 
 
 
Our funny, naughty, into everything, singing, laughing little girl is worth the long haul.
 
 
 

Sunday, March 4, 2018

Happy Birthday Mary Sasha

Seven today!
 
 
 
 
Happy Birthday sweet girl!!
 

 
The prettiest girl in the house!
 
 
Her favorite favorite movie in the entire world!!
 
 
Let it go!!

 
Happy Birthday, Mary Sasha!!

 

Thursday, February 22, 2018

Whatever You Do

 
I lay in bed early this morning with her feverish little body pressed up against me. Her little fingers laced tightly into mine. Her head heavy on my shoulder. Every few minutes her body seizing.
 
It's the second time in a week that she spiked a fever although this time it wasn't at the terror-filled 105 level it was a week ago. All three of our littles have battled the fever and cough and body aches over the last two weeks. Just when we think we are through the woods it hits again.
 
 
We are in the final weeks of finishing our book. The hardest weeks. The hours in the day not enough to get done what needs to be done.
 
Our wonderful new helper found another job. We are back to tag teaming child care and work.
 
Doctors visits, testing and other appointments have kept us on the road more than we would like.
 
We now have two wearing glasses.
 
 
 
Conventions loom in a matter of weeks. I have seminars I am giving with no time between now and then to prepare for them.
 
How Lord?
 
I lay there early this morning holding my baby girl, fighting off exhausting. It is easy to slip into self-pity. Some days I go there quickly. How Lord? How?
 
Then she reaches her little hand up to my face, pats me and pulls my head down and kisses me on the cheek. She snuggles back down in my arms. Burrowing under the covers. Pressing as close as she can. Back to sleep. Safe.
 
Those moments.
 
And these - three littles helping Papa make Sunday morning pancakes.
 
 
 Precious moments of pleasure in the midst of hard.
 
Little girl's seizure still out of control.
 
How Lord?
 
I don't know how. It's one step at time at this point for us. But I know that this is what we have been called to do. These kids. Each one. Our business. The books we write. The families we minister to through our material. The students I teach. Simple ministries every one. It isn't glorious. It doesn't allow for time off and days away. But it is what God has called us to do.
 
So we dig in and plow ahead. Ministering as we go. Trying to be faithful in all that we do. God-honoring. Writing. Talking to homeschooling families. Loving our babes.
 
Some days better than others.  Praying for grace and strength. Finding joy in the small things.
 
"Whatever you do, work at it will all your heart as working for the Lord..."
 
 
 
 
 
 
 
 

 

Monday, February 5, 2018

Silver Linings

Though we continue to walk a hard road right now with little girl... we can look around and see little silver linings in the hard.
 
The prayers, kind e-mails, words of encouragement and private messages that have been sent our way over the past few weeks. They are silver linings.
 
 
 
She is no longer pinching and hitting every five minutes. Another silver lining. 
 
Instead of pushing me away in frustration and anger, she has moments now where she wants to be held.  Huge amount of silver there. Each morning I get the joy of gathering her in my arms and holding her as she drinks her juice. Rocking and holding and kissing her little face as she drinks. Precious moments. I don't take them for granted.
 
 
  
Another very important silver lining for us is that we qualified to receive assistance through a program here in Virginia. This means that we now have an extra set of hands in our house to help us with little girl. Those hands are priceless and I am thanking the Lord for the help they are giving.  Rob and I both work from home, but since Mary has been here I have not been able to do any work. We have a new book coming out in a matter of weeks and I am so behind on what I need to do for this book that I was starting to drop into a dark hole of depression. This week I have been able to start chipping away at that mountain of work and already am feeling mental relief from everything.
 
 
 
Every night before she falls asleep I go in and sing Jesus Loves Me to her. She will often reach up and wrap her arms around my head while I sing and will sing along with me in her funny little manner. When I'm finished she grabs Pooh Bear and holds on to him tight and burrows deep under her covers. We sing Winnie the Pooh together and then I cover her with kisses and walk out of the room with her protesting loudly until she drops off to sleep.
 
 
The singing. The kisses. The hugs. The protesting. They are priceless silver linings. They make me chuckle every single night. They bring a smile to my face no matter how worn down I am.
 
We have been blessed by these silver linings.
 
We still covet your prayers. It is so hard to watch our little girl have seizure after seizure after seizure all day long. It's hard to see her drugged and frustrated and unhappy.
 
She's on three drugs right now and two of them are just completely messing her up. We were backing off one of them because she was raging, but had to stop backing off that one in order to back off the other one which makes her so drunk and drugged that at times she can hardly hold her head up. Think raging drunk and you have a good idea what she is like a good bit of the time! Raging drunks don't know how to make good decisions and have no sense of danger. Raging drunks need to be watched every single solitary moment. Raging drunks hate being told no!
 
It's a struggle for her and for us as we try to figure out how best to help her.
 
All the silver linings the Lord has given us in the last few weeks - they are our lifeline in the midst of hard.
 
The Lord is trustworthy in all He promises
and faithful in all He does.
The Lord upholds all who fall
and lifts up all who are bowed down.
 
 

 
 

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!