Monday, January 11, 2021

Hard Pressed

 

Brutal.

The last five days.


Don't be fooled by the cute smile behind her faceplate helmet.

Fractured jaws HURT - especially when eating.

And with Mary's Keto diet - adjusting her diet to a soft diet with foods she WANTS to eat and doesn't have to chew has been a huge, horrible, exhausting battle.

Her Keto diet isn't an on again off again diet. We can't just stop or cheat. We have never ever cheated in almost three years on this diet. The last five days have demonstrated how fragile she is when her ratio is off or when she stops eating. The seizure storms invade. Seizure storms make it hard for her to swallow. Which send her even deeper into the storms. We have had to rescue her over and over.

Eating has been miserable.

For everyone.

We have resorted to begging and bribing and shedding quite a few tears (me). 

We have adjusted her diet, worked with the dietician, tried this, tried that and beat our heads against the wall quite a few times.

Last night and this morning the battle was a bit less. She still stormed and struggled to swallow but it wasn't the one to two hour battle it has been in the last five days.


We are praying that it's going to be easier as the days go by.

Friday we go back in and get x-rayed again. IF she is healing well and the jaw is lined up correctly, then we just stay the course. IF the jaw is not healing or not in proper alignment... then... 

Okay...

I don't want to think about it.

They chose this conservative route in hopes that the jaw would heal correctly.

They chose it because Mary's seizures make it difficult to consider immobilizing her jaw. 

I'm grateful for that choice.

We are desperate for it to be the right choice.

Please pray that the fractures in her jaw heal correctly.


Pray Little Girl can heal and get this behind her.

I've struggled for the last five days emotionally. Why? She was doing so well. She barely falls anymore. Why when she does fall it is so brutal that she fractures both sides of her jaw??  

I realize there are no answers and so I cling.

Psalm 118:5 "When hard pressed, I cried to the Lord; He brought me into a spacious place.

What hope.

Though pressed in. Overwhelmed. He gives space. 

Thank you for lifting her and us to the throne.

Don't stop.









Thursday, January 7, 2021

The Best Laid Plans...

On Monday I took John and Aaron to Shriners in Philly. We met with three doctors and when I got home I sighed with relief. 

Aaron's next surgery will happen when his fixator starts to break down the skin. A month. Two. Until then we get a break.

No hospitals.

No distractions.

I can get some desperately needed work done.

Well the best laid plans of mice and men....

Yesterday Little Girl did a face plant into the floor and cut open her chin.

She cried hard.

Mary doesn't cry hard unless she is seriously hurt.

She refused food. For a child on Keto that's dangerous. She started tanking. Seizures piling on top of each other.

We began wondering, wondering if her jaw was fractured.

So off to the ER we went.

Okay. Valet parking at the ER has always been one of the nicest features of our hospital. I can pull up with a child who is in distress and they will go park my car for me.

UVA no longer has valet parking. COVID. Really? A medically falling apart child and I have to go park in the parking garage and walk back over. Carrying bags and holding on to a seizing child. 

Breathe. Bite tongue. One step at  time. Thankfully an orderly came with a wheelchair. Thankfully.


X-Rays. X-Rays again. Stitches. Rescue meds. Finally eating although with great care.

They sent us home with a pat on the back and thumbs up for clean X-Rays. No fracture.

This morning she had status. We chalked it up to the trauma of the last 24 hours. After she recovered, she ate but carefully. Guarding her jaw. 


We started breathing. Feeling a bit like we were over the worst.

Then the phone rang.

A resident error. The X-Rays showed fractures on both sides.

And so back we came. 


CT Scan and then waited.

All day.

UVA is a teaching hospital so one by one each resident from every department that is even remotely connected has to come in. Examine. Ask questions. Evaluate. Then leave.

Mary has been a rock star.

She did not complain, fight or even barely whimper last night when they put in the stitches. She didn't even throttle the doctor when the Novocain wore off and she was able to feel the needle stitching her skin together. She just grimaced and whimpered to let them know she could FEEL the stitches going through. 

She has not complained that her jaw hurts. 

She has not fussed about being stuck on a stretcher all day.

She has cooperated with all the X-Rays and CT scans.


She has been sweet to everyone coming in and prodding, poking and bothering her. All three thousand residents who have poured through the door.

And finally they are letting us go. No surgery for now. Praise the Lord.

Watch and see. Soft diet. Give it a week and see how she is doing.

Praise the Lord.

A long long day in the ER...


A tired little girl. Sore. Fragile. But homeward bound!

Wednesday, December 23, 2020

Look What I Have Given You

It was Sunday morning during the worship service.

We were singing the tried and true Christmas carols and I was lost in the joy of worship. 

Suddenly little arms wrapped around my waist and my helmeted Little Girl pressed into me singing her version of the carols. 

I looked down as she clung to me, singing, worshipping. 

I looked over at Aaron who was diligently trying to sing the words. I peeked further at John who caught my eye and grinned at me.

Both boys in their very ugly sweaters.


Little girl in her 'ugly' dress.

It was one of those moments.

The reality of how blessed I am.

From the outside our world seems insane. 

And most days I would concur.

But on Sunday, for a few moments, I saw my three littles as the gifts they are. 


Precious.



A sweet moment. A God moment.

A whisper to my heart. Look what I have given you.

I came home after church and saw a bag hanging on our porch swing.

I thought maybe one of the kids put it there. Probably Mary. Filled with junk toys. 

Or trash.

I sighed as I went to get it. 

It's always something, right?

Mom's job is never done.

It wasn't junk. It wasn't filled with trash. 

It was homemade bread.

From our neighbor.

And an envelope.

With money inside.

Money to be divided between Preslley and a child of my choice on Reece's Rainbow.

I stood there so deeply surprised, blessed, encouraged.

Another God moment.

I had no idea my neighbor even read our blog.

She didn't just read it - she was moved to do something.

And the Lord whispered again.

A reminder. A word of encouragement.

Through a kind neighbor wanting to make a difference.

I put half the money in Preslley's account.


And I picked the babe at the very bottom of the tree, Amelia, and gave her the other half. 


And I whispered a thank you.

And a prayer for two little babes who need families.

In our insanity - He whispers His presence.

Look what I have given you!

Emmanuel.

God with us.

It's what Christmas is all about.

----------

I shared this on Facebook but am sharing it here too...

Here is Ben singing, Behold the Lamb


If you feel moved to action - There are 74 babes who have not reached their 1,000 goal on the MACC tree.

CLICK HERE to go see them.

Pray, give, advocate, adopt.

Thank you!










Friday, December 4, 2020

Not Just Preslley

 This morning I went to the MACC Tree to see how my boy was doing.



He has 755.00 in his grant account. 

Go Go Preslley - He still needs 245.00 to read the $1,000 goal. Thank you to each of you who have given to help him get to his goal!!

But the saddest....

He is on the wrong part of the tree. 

He needs to be at the TOP under MY FAMILY FOUND ME!

Five babes are up there this year.

The rest - all the faces - they need Mamas and Papas.

Go look.

Go see.

Don't turn away.

Yes. I know. They all have some kind of special need or another.

But scary words do not define a child.

They do not define Preslley.

And they do not define the rest of those babes.

Even if you can't adopt... go look.

Find a babe. Donate a bit to help them.

Find a babe. Share their face on social media.

Find a babe. Pray for them.

Find a babe. Tell your friends in church about him or her.

Find a babe. Talk to your spouse. Your kids. 

Consider!


Just consider.

Not just Preslley is on that tree.

And all but five need someone to love them best of all.

MACC 2020


Tuesday, December 1, 2020

A Relentless Beast


Last night Mary had two status episodes. Twice we were ripped out of our sleep to alarms and a seizing child. They are heart-stopping, brain shocking events. 

We are torn between trying to get to her, pulling rescue meds and shutting the stupid alarms off. 

The watch she wears is connected to an iPad which triggers the alert. The alert is sent to our house phone and our cell phones. 

Everything goes off. Everything. 

And nothing will stop until you respond to each one. 

And if you don't respond fast enough - they go off again. 

And if you forget to remove the watch from her seizing arm - the alarm will trigger again. 

That happened last night. 

Many times. 

By the time we have her stabilized, rescue meds in her - we are both in full-on post alarm traumatic syndrome. All we can do is just stare at each other.

This morning I am a mental wreck. Exhausted. 

She's been doing so much better during the day. If not for nights like last night we would be throwing parties on how well her day seizures are going.


Nights like last night are vivid reminders that our little girl suffers from a beast that is relentless. It body slams her to the ground just when we think we have it tamed.

Why am I sharing this?

Because my MACC pick this year is a little boy who has epilepsy.

He takes meds all the time to keep his beast tamed.

I have no idea if those meds work or not.

He has speech issues.

He has orthopedic issues.

He has other issues.

He has NO ONE fighting for him. NO ONE getting up and rescuing him in the night. NO ONE caring for him. 

He is one little boy among so many out there but HE MATTERS.

He hasn't reached his $1,000 goal. We are still $405.00 short.

But more importantly - he doesn't have a family.

YES. Epilepsy can be scary. It can traumatize. It can cause sleepless nights and post traumatic stress syndrome.

But... Mary would not have survived.

Not over there. Not the way her epilepsy was progressing.

I am sharing Preslley with you because that little boy is battling the relentless beast alone.

Alone.

I don't know his prognosis.

I just know that right now he needs us to share him far and wide so that somewhere out there a Mama and Papa will see him and will stop long enough to hear the Holy Spirit whisper - He's yours.

Go.

Go.

Please share.

Please give so that money is not a factor in the decision.

Please please please pray for Preslley.


Wednesday, November 25, 2020

Mary's Christmas

 Did you know that if you say Merry Christmas that it really means Mary's Christmas??

And that pretty much sums up who is in charge in our house!!

She cracks us up. Every single day.

She also has added a ton of gray on my head.

Notice how the boys are watching her holding the kitten. Little girl isn't the gentlest, yet our cats never complain.


Surprisingly, they will climb into her lap when she is sitting on the floor. She is roughly affectionate and they are none the worse for the wear!!

We were expecting for Aaron to be heading back to Philly in a week or so but his doctor has decided that he wants to wait. So no Christmas-time surgery. It's good and bad. Good to have a respite from travel and that stress, but poor boy has to live with a cumbersome fixator on his arm for the next 6 weeks or more. He just shrugged his shoulders when I told him. 

I have to share this picture. Papa and his three littlest.



Thanksgiving wasn't quite canceled for us. My extended family usually descends upon our little house on the hill and we have a merry time together. But COVID dampened that merriment. 

Instead, we are having just our immediate family and our amazing aide and her children. This is the aide who comes three times a week and helps us prepare Mary's food. Without her I do not know how I would have survived doing Keto for 2 1/2 years!! She is just like family to us as they are here so much. 

So we are planning on a Merry Thanksgiving anyway. 

Of course Little Girl doesn't care much about the Merry Thanksgiving - she's waiting for Mary's Christmas!!

-----------------------------------------

P.S. thank you to all who have invested in Preslley - giving, praying, sharing.



His MACC grant account is at $545.00 which means he's a little over halfway to goal!!

PLEASE WON'T YOU GIVE? AND SHARE?

His link is HERE

If you are on Facebook - share his face. Tell your friends about a little boy alone who so much needs and deserves a family.

Last year, for those who remember, my MACC baby was Conrad.


I wrote about him and that post was shared and shared and shared again.

A Mama saw that post. I wrote the story HERE

The Holy Spirit used not only my words but the faithfulness of those who shared to reach a family who was LOOKING TO ADOPT.

Conrad's family is so close to getting over there. COVID slowed them down but they are moving forward! I cannot wait to see him in their arms.

Preslley needs those same faithful to give and share and pray.

Please!

Yell, give and pray far and wide for a little boy alone across the ocean.

If you are interested or have questions about adopting him, please reach out - covenantb@yahoo.com.




Scary words do not define him. He is so much more than a list of diagnoses.


Monday, November 23, 2020

A Bit of a Breather

Sometimes you just have to share a cute picture...

Little girl is heading for church...


One Great Wolf Lodge headband, one Minnie Mouse, One big pink My Little Pony Build a Bear, one big white My Little Pony Build a Bear and her photo album! All clutched in her arms - not gonna let go of anything!

We just don't even argue... she's happy and that's all that matters!

Aaron is doing amazing!


We do therapy on his arm but HE ALSO DOES HIS OWN THERAPY. He is constantly moving it, stretching it. 

 Dealing with the fixator all day is rough. It limits him so much but he just takes it all in stride.

He continues to blow us away with his attitude. 

He goes back for the third round in a few weeks. We are still waiting on surgery dates. 

While we have this short breather, I want to share Preslley with you!!!

Each year we choose a child on Reece's Rainbow and work to raise $1,000 in their grant account and advocate for them to find a family.

Isn't he adorable???


Look at his big eyes. Mama!! Do you see those eyes??

Preslley has epilepsy.

Just like Mary.

He has some orthopedic issues.

He also has speech delay. His profile says he doesn't talk.

He's just a little guy. Four years old. 

Epilepsy can be easy - take some pills and never see another seizure... but it can also be crazy hard. We live the crazy hard.

Whichever kind Preslley has - he needs to be in a family who can care for him, advocate for him.

Mary would not have survived long over there with her type of epilepsy. She was on the road to ruin. The amount of seizures she was having when we adopted her was insane.

She was a shaky mess when we brought her home. 


We have battled for three years to get her stable and she is finally finally at a place where we can see a light. She still has rough times. But she's so much better than she was when we carried her out of that orphanage.

Yes. She has been hard. Harder than anything we ever anticipated.

Yes we have cried many a tear and wondered what we have done.

But she would not have survived over there.

And I could not imagine our lives without her.

I have no idea what kind of epilepsy Preslley has. I can't give reassurances about his laundry list of issues.

I just know that the little guy needs a place to call home.

To ease the cost of his adoption - I am raising $1,000 to Preslley's grant account.

Will you help me?

It's easy. Just donate 5.00 or 10.00 or 25.00 or 50.00 or even more.

Click HERE.

If you donate 20.00 or more you will get Preslley's ornament to hang on your tree. 


Preslley is just another orphan across the ocean with a long list of issues and diagnoses.


At one point in their lives... so were these three.

Words on a paper do not define a child.

SEE PRESLLEY!!



Thursday, November 19, 2020

Bending! That's the focus!


Aaron spent a LONG day yesterday waiting. It's especially long when you aren't allowed to eat and drink!

It's a long day waiting if you are his parents too!

When he saw the doctor he was asked if he was happy that his arm could straighten. He said, "No."

My boy will tell it like it is. He didn't do this surgery to get a straight arm. Bending. That's the focus! Anything short of that is not good enough for him!

In surgery, they harvested skin from the top of his arm and grafted it to his open wound. No more med vacs!! That's a PLUS!

They spent time in surgery manipulating his elbow. 

Extension - no problem. 

Flexion - they got the arm to 105 degrees and had to stop. The fear of ripping the skin is HUGE.  Rob has the pictures from the surgery a few weeks ago and can see how beautifully Aaron's arm bent when the skin around the elbow was not a factor. He said it bent just like a normal person's elbow bends. THAT FAR. 

The skin is the problem. Getting it to 105 was an answer to prayer but knowing that Aaron's arm can go to 130 breaks our hearts. Just imagine how life-changing it would be if Aaron's arm could bend fully!

They removed some of the staples but left the ones around the elbow to keep it reinforced.

Rob is getting lessons from the doctor this morning on how to work his arm. We will continue doing the hourly therapy with him to retain the range he has and possibly push for more.

From what Rob was told last night - they are going to remove the block on the fixator that has been holding it at 90 degrees. If we are able - we can push past the 105 degrees as the elbow continues to heal. Everyone still wants more. 


We aren't giving up. We are praising God for 105 degrees and we are praying for more.

Aaron did amazingly well - his attitude continues to amaze us. 

This morning, he ate a man's sized breakfast and is up and ready to come home!

He will have to go back in a matter of weeks for the final round to get the fixator removed. It will possibly be another opportunity to get the elbow moving!

On top of that - The doctor is now talking Plan D for Aaron. Another surgery down the road.

It's not something we have to decide now and in the end Aaron will be the one to say yes or no. 

He's our warrior - brave and true!

 

Wednesday, November 18, 2020

Second Surgery


When Aaron agreed to the total reconstruction of his elbow, we never considered it would be more than just one surgery and one recovery.

Honestly, I'm kind of glad we didn't know.

Yesterday morning, Rob and Aaron drove to Philly for the surprise second round.

Aaron was mentally ready to go again (not that he isn't a little anxious)

I've truly been amazed at his attitude through this whole process.

He came home last week with a crazy med vac machine pump to protect the open area where they cut out a chunk of skin to quilt into his elbow.

That machine has been a bit of a nightmare for the last week. It has beeped and dinged and shut off and forced us to call the home health nurse over and over to come get it working again.

Each time she comes we have to remove the  bandages and reapply!

Though it is a tad gross to look at... happily - it looks good!

I know sharing pictures of his arm is going to cause some to run for cover.

But today is HUGE as they are going to graft the open wound and also test the elbow.

Will the skin stretch?

That is the big question.

If it stretches - Aaron gains more range of motion.

If it rips - I just may cry a bit.

My boy is brave and trusting.

He knows there are many many people praying for him and that has given him such peace.

He has said several times to me that God is hearing those prayers.

I want you to SEE what you are praying for.

You are praying that the skin on Aaron's elbow that has been quilted in will HOLD and will STRETCH so that in surgery, when they move his arm - they will get the range back that he had in the last surgery.

40 degrees to 130 degrees.

That was the beautiful range the surgery accomplished.

We are fairly certain that the 40 degrees will be reached (extension). Aaron's is at 50 degrees now. 

It's going up that is the problem.

Right now he is locked in at 90 degrees. The fixator has not allowed us to push for more so that the skin can heal.

When they release it, the doctors are hoping for AT LEAST 105 DEGREES. 

More would be even better!

The simple task of feeding yourself is something the vast majority of the world takes for granted.

My boy can't do that and he never ever ever complains about it. 

He just does what he can and quietly endures what he can't.

We are praying hard for 105 degrees and more.

105 doesn't get his hand to his face... but it is better than anything he has now.

We are praying for a miracle and then some. 

Please pray with us.

No matter what - Aaron will fight through it.

Because he's not only brave.. he's a Warrior!


Saturday, November 7, 2020

Aaron's Suite

 


It's a lazy Saturday afternoon.

Aaron's starting to decide that hospital life isn't all the terrible.

He has a comfy bed to sit and watch TV in... 

.....and of course take naps whenever he desires.

He has his own gaming area in the room - complete with TV, chair and side table for drinks and snacks.

He gets fed three meals a day off a menu that has all his favorite foods.

He received driving rights and can take his med. vac all around the floor.  

He has met other long-termers (some who have been here more than a month) who love nothing more than just chatting or playing electronics together. 

I mean seriously... apart from the surgery, pain, therapy - he's living it up here in his private suite with a view! (Covid does have its benefits)

Me. Not so much. 

I miss home. 

I miss my bed because a pull out chair that pretends to be comfortable is not a great substitute.

I miss my office and my office chair and my privacy and my routine and my kitchen and my non-hospital food (I don't get the same food choices Aaron gets) and my ability to get work done without constant interruptions!!

Okay - I get the constant interruptions at home but still...

I am longing for home.

And honestly - so is Aaron.

His pain is manageable which is a HUGE praise. 

He is doing great in therapy. 

We are homeward bound on Monday.

He will be back the following week for the skin graft and while he is under they will see if the skin flap on his elbow will allow for more range. That is our BIGGEST PRAYER right now. His arm now has the ability to bend and extend - but will his skin give enough to let him do it or will it again rip.



For those asking/praying over Mary - she's been hanging in there. Please keep praying for her and for Rob. 

She's a mess of a roller coaster and every day is an adventure with little girl!!

We are feeling your prayers and for that we are truly grateful!