Breathe Mary Breathe

It caught us off guard.

What used to be scary had become commonplace. Status epilepticus. Non-stop seizures. Mary's style. 

Unique. Different.

We had a routine.

One of us would hold her, speak softly to her. The other would draw up the meds.

She had been sleeping peacefully next to me in bed.  The next minute she was in status. No pre-seizures. No warning.

It had been happening like that more and more so that in itself didn't scare us.

Concern us, yes. But we knew what to do. I called Rob on the intercom. 

I carried her downstairs and laid her on the couch and held her while he mixed her meds and gave them to her. And we waited. 10 minutes. That's how long it would take.

We were pros at the hard. We were used to waiting. 

Except this time we weren't.

Instead of the regular rhythm of status it changed.

Suddenly Mary slipped from her wacky style of seizing into a full tonic-clonic seizure.

From one to the other as fast as we could blink.

Her breathing stopped and so did we.

Her body rigid and convulsing.

We weren't prepared.

Fear enfolded us as we began to rub her chest. Breathe, Mary, Breathe. Her lips turned blue. Then her face. Breathe. 

Please, Dear Lord. Breathe.

Time stood still as we waited. And begged. Foam coming out of her mouth.

Then a gasp. A gasp again. A gurgle. teeth grinding. And breathing started. Shallow. Quiet. Long pauses between each breath. The rescue med suppressing her shallow breathing even more.

We weren't prepared.

Nothing can prepare.

It happened again a few days later.

And then again. And again.

We are no longer blindsided. We are a bit more ready but less comfortable. Her seizures are changing and we can't keep up.

Yesterday her VNS was turned on. It sends electrical impulses to the brain through the vagus nerve. It goes off every 5 minutes. We have a magnet that we can also use to set it off ourselves.

It was turned on but is currently at the lowest strength. Over the course of the next 6 months it will be increased bit by bit.

Yesterday morning she went from breathing quietly beside me to status. Seven minutes later she slipped into the tonic clonic seizure we have now, sadly, come to expect. We set off the VNS but didn't expect any results. It will takes weeks or months for it to work effectively.

It's a bad movie that just seems to keep getting worse.

Lately her drops have had her falling head first. Twice yesterday she slammed her face into the ground. Her helmet is no longer protecting her from the angle of the falls.

Both times blood poured. Her face is now bruised and puffy.

In between seizing and falling she is desperate to be just a typical little girl who thought making mud pies with the ash in the ash bucket a total blast.

So for a while her bruises and cuts and scrapes were mixed with dirt and ash.

And we could laugh at our messy-faced little girl.

With the cut lip. And the bruises.

And cry inside.

Breathe.

Found

Found

Preston has a family!!!

After I wrote my blogpost they contacted me and said they were in pursuit!! 

Well wasn't that just like having Christmas all over again!!!!

The coolest part.... They don't live that far from us and chances are we will share the same hospital... which means I will get to see Preston!!

Woo Hoo!!

Watching RR children thrive in families is one of my favorite pastimes!

So shout Hurrah with me!!!

Preston has a family!

One Little Boy

I remember the day. Urgent prayer requests came over the internet.

A little boy was near death. Screaming. Gasping for breath. His body convulsing. 

He was dying and the caretakers at the institute where he lived were refusing to get him care. The hospital where he had been just days before had discharged him because he was deemed hopeless. 

He was dying and no one who mattered cared.

All looked hopeless.

His little body shriveled and tiny and barely hanging on to life.

The ministry team surrounding him pleading and praying.

I remember the pleas and my heart cried out to the throne that he be spared. Breathe life, Lord. Give him more time.

Just one tiny little boy in an institute filled with boys. 

I remember the efforts that were made to get him the care that he needed. The night vigil around his bed. The phone calls to anyone who would listen. The government officials who were stirred from their apathy.

I remember finding out the next day that mountains were moved and this one little dying boy was rushed back to the hospital.

I remember.

Two years later that little dying boy lives.

His life spared.

For two years he's lived a protected life. Strings were pulled and that tiny little boy was placed in a foster home instead of at the institute.

For two years he has been allowed to grow and thrive in a house full of love. He's been given good food to eat and a warm bed. He's been surrounded by hands that love him and it has made all the difference.

He's a different little boy.

For two years he's lived with a single mom and her daughter who love him deeply.

But his protected life is soon coming to an end.

He's an orphan.

Orphans can't be adopted by single moms in his country.

Orphans belong in the institute in his country.

Orphans have no rights and no voice in his country.

Soon he will be headed back to the institute of indifference.

Soon he will be leaving a home filled with love and kindness and placed back in a building that reeks of urine and feces and is filled with boys and men who have been relegated to a life that is truly not living.

He has only one way out.

Adoption.

A family needs to boldly step out of their comfort zone and race across the ocean for one little boy.

He has some serious special needs, yes. 

But he is much more than a list of needs on a paper.

He's a lively, smiley, aware, social little guy who loves people and loves life. 

He's not an unknown child with just a diagnosis on a piece of paper. 

I have friends in his country who KNOW him. Just this last week they took him to the mountains with their family. 

They were the ones who stood by his bed in vigil as he lay convulsing and dying.

They were the ones who made phone calls and fought tooth and nail for him to be spared.

For the last two years they have been watching him, praying for him, loving him.

They have supported his foster mom and encouraged her as she has raised him.

They are grieving the reality that his time with her is soon over.

They are crying out for a family.

They are pleading to the Lord that he not be sent back.

They minister in the place where he will go.

They have adopted one out of there and are guardians to three others. They know the damage, the heartache, the horror that awaits him if he is sent back.

They know the smells and depravity of that place.

They have sold everything in their life here to minister in that place over there.

With all their hearts they do not want him sent back.

Are you feeling bold?

He needs bold.

He needs strong.

He needs a family of faith willing to step out and race to get him.

Please.

Someone rescue Preston!

Click HERE and HERE to find out more about Preston.

Pray. Adopt. Advocate.

Preston has $8,464.50 in his grant account on Reece's Rainbow towards the cost of his adoption. 

Heading Home

We are going home! 

What we have learned in the last few days... Our little girl is fragile! 

That has been a hard lesson for all of us.

Her little body can't handle things like fasting for surgery or anesthesia or disrupted sleep or anything else. It will throw her off in every way.

Being on the Keto diet makes her even more fragile.

We are going home today, even though little girl is still not back to normal. But we are hoping that being home will encourage her to eat again and getting good sleep will help her to heal faster. 

She's not throwing up and that is a HUGE plus.

Her blood work is back to 'normal' which is another HUGE plus.

She's still acting strange which has a lot of doctors scratching their heads. 

But she's not strange enough to keep her another day for which we are very grateful!!

Our one of a kind little girl made sure everyone knows that she is definitely one of a kind!!

Heading home and grateful for all the prayers! We are also grateful for the kindness of our friends and my dad who pitched in and helped us with our sons, provided us food and cared for us during these past few days.

Acidosis

We are back in the hospital.

Little girl took a nosedive on Friday... we at first attributed it to the anesthesia wearing off but on Saturday night when she emptied her stomach we knew there was something seriously wrong.

So off to the hospital and tests.

Her blood work agreed with what we had already figured out. Her ketones had skyrocketed after fasting for surgery on Wednesday. This caused a host of reactions including extreme dizziness, slurred language, lethargy,  nausea and vomiting.  

It’s a bit of a vicious cycle she is in. Vomiting equals fasting which increases her ketones which keeps her in acidosis. 

They are doing as much medically as they can... we have a few options to get her ketones down but the reality... little girl has to eat her calculated meals and get back on track.

So we are waiting it out here hoping anti-nausea meds will kick in and she can start eating without losing it.

Would again covet prayers for our little imp.

Mary Update

Wednesday was a LONG day for little girl. But she was unbelievably patient and well-behaved despite the fact that we kept refusing to give her any food each time she asked. Her surgery didn't start until 4:00 in the afternoon. That was a long time to go with nothing to eat or drink since the night before except water. Poor babe!

She wasn't too excited about all the people poking and prodding her and refused to answer any questions or engage with anyone except us. 

We knew when the happy juice they gave her had taken effect when she drunkenly gave the anesthesiologist this smile!!

She went back to the OR clueless and in good spirits.

She came out three and a half hours later quiet but doing quite fine. 

The surgery went well. They put the VNS device in and in three weeks they will turn it on. 

It will be set at the lowest setting and each week they will increase it. 

So it will be awhile before we see if her seizures decrease with the implant. It gives us extra weeks to pray hard for the best results!

We came home yesterday afternoon after a rather LONG and SLEEPLESS night at the hospital. Our roommate, we learned, loves SpongeBob and is afraid of the dark so we spent the night with the room lit up like Christmas and the TV on at the loudest volume possible. Around 1:00 am I was able to at least get the volume down but not the lights. Little girl had to bury her head under me to hide her eyes from the lights. 

You would have thought that our roommate would have slept in but at 6:00 am the TV volume was turned back up and we got to listen to more episodes of SpongeBob again. 

Coming home is the best after a night like that! 

Thank you to all who are praying for our little girl! Keep them coming! Seizure free is our heart's desire!

Staying the Course

Today's the day.

Surgery.

I've been through a lot of surgeries with my kiddos in the last number of years. 

Every one of them is hard.

But somehow for both Rob and me, this one feels extra tough.

The surgery itself is not complicated.

But when it is done our little girl will have two scars on her body and a device inserted that may or may not work.

The chances of it not working are high enough that part of us wants to put on the brakes and cancel the procedure. But we have few other choices at this point. So we are staying the course.

I would be a bit less stressed about it if her surgery was this morning.

Instead we have to sit out the morning at home with a hungry little girl who probably won't have surgery until after 3:00 this afternoon.

A long day to sit and think and wonder and worry and whisper prayers to the Lord for this to work. 

I'm whispering a lot of prayers.

The bright spot to my week is that every single Itty Bitty made it over the $1,000 wall. Go look. I honestly didn't think it would happen this year. I gloomily told Rob on Monday morning when 51 babes still needed to jump the wall that it was hopeless.

Yes. I said that word.

I confess.

It wasn't until Monday evening that things started hopping on the wall.... 

I didn't stay up to watch all of it (medically fragile children rob you of so much sleep that staying up for New Years just is not an option), but before I went to bed I saw a whole bunch of lovies jump. I climbed into bed with my spirit lifted after seeing that jump. It made my day. The next morning all but 9 babes had jumped the wall and this morning - everyone was over.

Every single Itty Bitty.

Thank you to everyone who gave to them.

And thank you to everyone who is praying for my littlest today. We so appreciate every prayer on her behalf.