Before surgery...
After surgery.....
Before surgery...
After surgery...
Before surgery...
After surgery.....
Before surgery...
After surgery...
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.
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.
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!
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.
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.
Sometimes you just have to share a cute picture...
Little girl is heading for church...
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!