Thursday, January 28, 2021

Don't Let the Bedbugs Bite!


Before surgery... 

After surgery.....

Before surgery...

After surgery...

Oh Yeah!! This is ONE HAPPY AARON!

Not only does he get to wear a long sleeve shirt for the first time this winter (brrrr), for the first time in many many years... he can feed himself Doritos!

That was one excited boy!

Did the last three months of hardship accomplish anything???

Was it a waste of time and effort???

LET'S PUT IT IN PERSPECTIVE.... Before the FIRST surgery Aaron had a 10 to 15 degree range of motion. After this surgery: A 70 degree range of motion. That's amazing!! 

Is their room for more?

Based on what they accomplished in the first surgery - YES. Based on his skin - we have no idea.

In surgery they had his flexion to 130 degrees. Right now his flexion is 115 degrees.  

We could be sad about the 15 degrees lost BUT... let's remember... when he came out of that first surgery and they told us about the skin disaster ... he was at 95 degrees and the MOST they anticipated was 105 degrees.

But Aaron has worked HARD in the last three months. He has pushed through the pain - he has worked his elbow day after day and he gained 10 degrees MORE than they thought!

So is he done?? No way.

He wants more. We want more. 

Prayers People!! 

All those prayers for our boy!

Hard work. Determination.

It's a great combo!

Keep it up. Our boy is a fighter.

God is so good.


As for me...


I experienced a first on this trip.

There were visitors in my bed that didn't belong.

Nasty little critters with a nasty bite!

Just my bed.

Aaron got a pass on this particular agony.

They spent the night chewing on my arms, and hands and ear and back and on and on...


I've been to a lot of hotels in my life. Some five star and some at the definite lower end of the scale.

This was a 3-4 star rating hotel. The Shriners paid for our room.

I have to say quite emphatically that I will never ever go back there as long as I live.

Every one of my bites is swollen and painful and I just never ever ....

Why my ear??? Really? They nibbled on my poor ear!

I now know what it means to not let the bed bugs bite!

And yes, we made sure those critters didn't come into our house.

Tuesday, January 19, 2021

What a Difference...


What a difference a week makes. Prayer makes. Healing makes. Eating makes.

Mary's jaw is healing nicely. We get to stay the course. No surgery. Just continue with the soft diet and no falling!

No falling... hmmm.... that's a very tall order!

Even without seizures!

She's a Warrior girl.

Yesterday I looked out and she was on top of a chair which she had placed on top of a chair and was holding onto a branch to pull herself up into the tree.

She's a heart attack waiting to happen.

Last week she donned the fire gloves, opened the wood stove and attempted to add wood and paper to the fire.

She's going to give me a stroke.

She's fearless and has no sense of danger.

Parking lots scare me silly when she's around.

She doesn't realize that her drop seizures make every set of stairs, ledge, stool, jungle gym or any other high place a danger-zone. 

She's carefree.

Just don't be fooled by her cuteness.

I'm going gray by the day!

In the meantime... 

We've been waiting for Aaron's arm to become infected.

How often do you hear those words?

When your arm becomes infected - call us.

Not if. But when.

Well... it is officially infected.

Pus oozing and a lot of pain for him.

Poor Aaron.

So next week we are heading back to Philly to remove the fixator.

He will be so happy to get that thing off!!

We will be so happy to get that thing off!!

Then we will finally see what Aaron's arm can do.

He's been diligently bending it every day.

The skin is healing. It's not completely closed at the elbow, but close enough that we are no longer worried about it ripping.

He has good range considering everything that happened, and while he is under anesthesia they will work for more.

He's come a long way and we are beyond grateful.

What a difference a few months make. Prayer makes. Healing makes. Therapy makes.

God has been so kind to two of the toughest kids I know.

Thank you for praying.

Please don't stop.

Monday, January 11, 2021

Hard Pressed



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... 


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!