Being Honest

It's Sunday morning. A little over an hour ago little girl was snuggled next to me sleeping soundly. I was laying there thinking, praying and trying hard not to wake her up. She stretched a bit and reached for the covers so I reached over and pulled them up over her. She snuggled down again and I lay there in the dark watching her. Less than two minutes later I was hitting the intercom to let Rob know that she was in status. One minute she was snuggled peacefully beside me and the next she was seizing non-stop.

My heart hurts.

All the time.

Little girl seizes all day long. On good days our clicker reads around 40-60 seizures for the day with no status. On bad days it reads well over 100 and usually a status episode. I don't want to even discuss the worst days.

I show you pictures of her smiling and happy and it's easy to think that all is well. Our reality is a sister who is happy and silly one moment.

And seizing the next. 

She seizes all day long. No matter where or what she is doing.

An even though it seems we may take it in stride - they break our hearts. 

Little  by little. Seizure by seizure.

This Wednesday she is going in for surgery. She will be getting a VNS implant. It's a pacemaker-like device that will be put into her chest and connected to the vagus nerve in her neck. It will be programmed to send off electrical pulses designed to try to break up her seizures. They don't know how it works but for many it does. It isn't a cure. It is palliative. It will hopefully decrease her seizures but chances are it will not stop them entirely.

We are praying hard for the device to work well for her. We are longing for a drastic decrease in her seizures. 

It's Sunday morning. A little over an hour since we had to rescue little girl.

I'm being honest. I'm trying not to think about rescue or surgery or seizures.

Over the last few days I've been blogging about the MACC tree and 74 babes who desperately need families to fight for them. Yes. I said 74 because this morning another babe was found by a family!! Soon there will be one less orphan. That made me laugh out loud when I saw. 

MACC is therapy for me right now. It's a way to get my mind off hard things at our house. It's a way for me not to think about a surgeon cutting into my baby girl's perfect, unblemished skin. 

Will you help me in my therapy?

Seriously?

Go donate 5.00 or 10.00 or 50.00 or 500.00 to a babe on the tree and help get the bottom 55 over the $1,000 wall. Every one over is going to make me cheer in the next two days.

That's good therapy!

It's healthy and takes my mind off that hard that is coming. 

MACC ends at midnight New Year's Eve. That's two fun days watching 55 babes jumping the 1,000 wall. Mary loves looking at the babes with me. She doesn't understand the tree but she likes seeing all the Itty Bitties on one page.

CLICK HERE and join in the fun. 

It's good healthy fun!

Real Children

Meet Marley..

My favorite Itty Bitty on the Tree right now....

I mean seriously... look at her little tongue sticking out! I would love to take her tiny little self in my arms and just smother her with kisses!

She's one of the 75 teeny tinies who hasn't found a Mama yet!! 

Come on.... isn't there someone out there who has an abundance of kisses for Marley???

What about shy Codee or poor miserable Kerri or precious Lois?

They are real children. They are stuck in orphanages across Eastern Europe, Africa and Asia.

They are teeny tiny tots.

All in need of families.

There are only three more days for you to see all 75 babes together!

Plus, we still have 55 babes who are in need of some serious help getting to their $1,000 goal.

Please go see the babes.

Please consider, pray, talk, agonize, discuss and allow the Holy Spirit to whisper to your hearts.

Please give.

CLICK HERE

Marley and Braxton and Bodey and Lois and Wade and 70 more babes are waiting!!

Itty Bitties

It's the year of the Itty Bitties….

The littlest babies.

The teeny tiny tots under 5.

Some people groaned when it was announced that ONLY the Itty Bitties would be on the Angel Tree (MACC) this year.

Some people questioned the wisdom of only picking the teeny ones.

I did a HUGE fist pump.

I jumped up and down for joy.

I might even have cried a tiny bit.

  

All three of my adopted children were itty bitty babes in the orphanage.

All three were in decently run baby houses.

All three faced the sorrow and trauma of being transferred.

One went to a decently run older Level 2/3 children's internat where he spent way too long and learned that it is a dog-eat-dog world in orphanage land. 

One went to a Level 3 internat and then got dropped almost right away into the 'summer camp' from hell where she was barely fed or given her meds. She came out of that place bruised, sickly and starved. 

One was sent to a Level 4 mental institute. He wasted an entire year of his life sitting on a bench inside a shed.

All three suffered the trauma of transfer. All three were ripped from the familiar and placed in the unknown with no one by their side. All three learned behaviors of survival that are hard to give up. All three experienced abandonment. All three were completely alone.

In the birth country of my adopted children, transfer happens every year to the Itty Bitties who turn five.

Sometimes they are transferred even earlier than that.

Do you understand why I shouted for joy??

Don't get me wrong!  I care deeply about the older children. I grieve that they are too often lost in the system. All three of my children were 'older children.'

But I am so glad for the opportunity to yell for the Itty Bitties - to have the focus be on them in the hopes that they will find their Mamas and Papas before they have to face the trauma of transfer.

Some of those Itty Bitties are so fragile they will not survive transfer for long.

Some of them will end up in places where they will waste away with nothing to do and no one to engage their minds.

They are so little. They have such potential.

It's their year.

Seven of the Itty Bitties have found families - My Ronald is one of them.

There are 75 more teeny tots who are left.

Would you please go look at them?

Take a moment and SEE them.

If you have ever thought about adoption - if you are praying about it, considering it, wondering if there is room at your table - this is a beautiful opportunity to see 75 wee ones on one page. You can click their pictures and read their profiles. You can pray over them. Talk it over with your family. Pray some more.

Yes. Adoption is EXPENSIVE and LIFE CHANGING and EXHAUSTING and CONSUMING. Yes. You will never be the same.

But children belong in families. And these Itty Bitties are so in need of families. Some of them are in desperate situations. Without families they will not make it.

There are four more days until the New Year. Four more days for 75 wee ones to be seen on one page together. Four more days for yelling and advocating. Four more days for you to consider sowing into their grant accounts so that the cost of adopting them is relieved.

CLICK HERE to see the 75. Please see them. 

 

If you can't adopt them please give. 55 Itty Bitties still have not reached their 1,000 goal!

Fun Times in Philly

If he had his way it would not be having surgery five days before Christmas.

If he had his way he would not be having a surgery that he already had when he was eight years old. 

He didn't get his way!

Arthrogryposis is a rough diagnosis. It impedes his range of motion, makes it difficult to do even the simplest of tasks and his arms and legs and feet are always trying to revert back into their original birth position. 

Fortunately, Aaron's at an age where the reversion won't be as intense and this surgery, to get his arm into a better position for eating and function, should not go awry again.

We have all three littles here in Philly plus Elijah.

The ride up yesterday was harrowing. Mary went into status three different times. We were on the edge of ending up in two different hospitals.

Thankfully, this morning she's bright eyed and happy and her seizures are few and far between. Praying she stays that way!!

The roller coaster she takes us on is sometimes more intense than my heart can take!!

Today and tomorrow, we will wait on Aaron's surgery, hang with him when it is over, take John to his appointments, watch Mary fight boredom by pushing every button in the building despite being told no a thousand times and try to read a few pages in the books we brought. 

Elijah's going sightseeing.... 

Fun times in Philly.

Hopefully we can all go home tomorrow afternoon.

If we have our way...

Wait and See

To all those who lifted us up in prayers on Friday night - thank you.

Little girl came home yesterday.

Unfortunately,when you give two rescue drugs on top of giving a massive dose of Phenobarbital in order to break up seizures.... you can just about guarantee that the seizures will stop for a while but the little girl will be a bit wrecked.

Well... not a bit wrecked.

She's a total mess.

Yesterday she couldn't find her feet to walk on them. Today her feet go in the opposite direction of where she wants to go.

She can't communicate because her words sound like complete gibberish.

Her fine motor skills are non-existent.

Her frustration level is through the roof.

Yesterday when she wasn't sleeping, she was screaming. 

This morning she isn't screaming but is angry and agitated. Sadly, her seizures are coming back.

And we are no closer to understanding why she is going downhill.

We left the hospital with med increases, pats on the back, ideas of things we could try in the future and a 'wait and see what the bloodwork shows up' bit of encouragement.

The wait and see is the hardest. We know she is tanking for a reason which makes the bloodwork so incredibly important. 

But all we can do is wait and see and hang in there with our little mess of a girl on this snowy Sunday.

In the meantime - I want to thank all those who donated to Ronald's grant account!!!

I drew names and here are the winners for my little mini-giveaway...

Sue H - you won the Amazon $100.00 gift card.

Susan B - you won the scarf.

Please contact me at covenantb@yahoo.com so I can get your prizes to you!!!

Friday Woes

I am currently sitting on the bottom of Mary’s stretcher listening to her moan and cry in a miserable drugged sleep. I am typing on my phone with sketchy internet and no chance of a room. The hospital is full. I am grateful for an ER room and not a stretcher in the hallway. It’s been a rough day. 

Little girl has cycled into seizure hell this week culminating into needing to come to the ER. While here she went into status giving a whole lot of doctors and residents and nurses and everyone else in the area a chance to witness her unique version of non-stop seizures. 

They rescued her with some hard core stuff because one dose wouldn’t bring her out and they gave her even more to hopefully stop the cycle. We now know that this new rescue drug makes her drugged and miserable.

A pitiful crying drunk. 

We would appreciate prayers for our little girl. 

Prayers for us too would also be gratefully accepted.

Over the Moon!

What an incredible gift Ronald's Mama and Papa just received!!

A new picture of their little guy!

They are so over the moon excited.

I am so excited for them!!

I still have an Amazon $100.00 gift card to giveaway

...and a BEAUTIFUL scarf from Ronald's country!!

Tomorrow is the last day to enter into the giveaway so don't delay!!

Thank you to Carolyn, Maria, Alison, Nicole, Sue, Buddy, Tammy, Amy, Rachel, Carla, Laura, Amber, Alicia and Susan for donating!!! If you donated and I missed your name somehow - please let me know!!!

CLICK HERE TO DONATE

Magical and Precious

We couldn't put her in the play. She is way too unstable right now. Her seizures continue despite all of our best efforts. 

So we signed Aaron up for the Nutcracker and left little girl at home.

But the little drummer boy in Aaron's cast was overcome with stage fright. And the little ballerinas and candies and clown didn't want to give up their costumes to be the drummer boy. It was a crisis. We needed a drummer boy to match the song.

I had a volunteer. A ready and willing little girl who wouldn't mind at all wearing the cutest costume on the stage! 

She had helpers hold her hand and catch her each time she seized. She could wear her protective headband under her hat to keep her safe.

And she marched and sang words to a song she didn't know.

And she beamed with utmost pleasure.

And her Papa and Mama stood in the back and smiled through shining eyes. 

Magical and precious. Both our children lighting up the stage.

In the midst of many hard days right now... what a sweet gift from the Lord.