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!


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!

Friday, December 29, 2017


When you are rooting for 65 it can be rather daunting and a bit depressing.
Especially when 2 days after writing a heart-felt post, you realize that only ONE babe jumped the 1,000 wall.
Only one.
Until you look closely.
On Monday 44 babes needed to get over the 500 wall.
Today - 14 babes are left.
Only $2,240 is needed to get them over the 500 wall!
And the rest of the babes are quietly, slowly climbing.
It's not a stagnant wall.
And the babes OVER 1,000... many of them are still climbing.
It's HUGE, quiet progress.
It means that somewhere out there - lots of people are loving on 100 babes.
They are worthy of that love.
They are worthy of your love on this Friday morning.
They are worth your time and your prayers and your love.
Please consider clicking HERE and picking a babe or two or three and sowing into their lives your prayers, your love and your donations.

Wednesday, December 27, 2017

65 to 0

The magic number is 0
Right now the number is 65....
New Year's Eve is 4 days away and we have 39,772 to raise and 65 babes who need to get over the 1,000 wall!
That's one way to look at it.
OR... we can say... we have 4 days to go to raise awareness... advocate for children who desperately need families.... and raise as much as we can in their grant accounts!!
The goal is 1,000 in each account.
The ultimate goal... find families!!
So get on board.
Yell. Give. Advocate..... ADOPT!!
(Yesterday the three tinies at the bottom of the tree jumped up on the tree... THANK YOU to those who helped jump them up - they aren't over the wall but they are no longer drifting down at the bottom!)...
Here are three more tinies who are down at the bottom!!
Please help me get them up!