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!



Thursday, November 5, 2020

Breaking the Ground

We are still hanging out at the hospital... 


At this point we will be here until at least next Monday.

Wednesday was a rough day - breakthrough pain and interrupted sleep have worn him down.

For those who want a visual .... here are some pictures.... for those who don't... sorry!!!

Yes, that fixator is screwed right into his bone!


It it stabilizing Aaron's arm making it easier to do therapy.

As we talk to the doctors, I am gaining a bit more knowledge of the ins and out of this surgery. 

During surgery, when they bent his elbow and his skin began to RIP  - they had to take a piece of skin from above the rip and drape it over his elbow and sew it on. 


The skin they removed is exposed without anything to cover it up, so he has a wound vac to keep it from getting infected. In two to three weeks they will do a skin graft to cover the open area. In the meantime he gets to cart around the wound vac.



There is no guide book for this so everything is a bit of thinking outside the box.

This surgery is truly a groundbreaking one for other children with arthrogryposis. What they did with his elbow was innovative and amazing and they could not be more pleased with the outcome. It is truly going to give hope to many and for that we are excited.

What happened with his skin has also been a huge learning curve. They are already figuring out what they will do the next time. 

I love hearing that.

I love that this was not a dead end but there will be a next time and another next time and for each next time they will modify and refine and smooth out the procedure. 

We know so many children in this small world of arthrogryposis who have unbending elbows. Aaron's first time is their future and hope. 

But for Aaron - breaking the ground has been a bit sorrow-filled. At this point - we don't know if he will come close to his heart's desire - to get his hand up to his face. 

The next weeks/months are going to be so hard on him. He faces two more trips up here - hard hard therapy every single hour, every single day and a long healing process for a dream that just may be out of reach.

I continue to be so proud of him. He's working so hard and trying so hard to be brave.

Please keep praying for him. It's not over and we are not giving up. His doctors are hopeful that in the next surgery the skin flap they used to close the area on his elbow will stretch and allow them to again get his arm to 130 degrees or at the least 110 degrees.

That's our hope too!!

And definitely Aaron's!!!








Tuesday, November 3, 2020

The Good, The Bad, The Hopeful

 

To all who reached out and prayed and messaged and e-mailed... Thank you.

What started as a 3-4 hour surgery ended up taking 7 1/2 hours. 


After surgery, he spent sometime in PACU and then was able to go to his room.

By the time he arrived, I was a bit too exhausted to blog.

Plus, I needed to process all that happened.

He came back to the room with tubes going here there and everywhere.


Thankfully, they put in a nerve block that will last 4-5 days so his pain is currently under control.

How it went is a bit of a loaded question.


The good news - after many hours of very intensive, delicate surgery (they reconstructed his entire elbow) - they were able to get Aaron's arm to bend from 40 degrees to 130 degrees. That's HUGE. Aaron's arm could only bend 10 degrees. What they accomplished was groundbreaking. There was much rejoicing in the operating room.

But...

When they tried to sew his skin back over the open wound - things went south.

Aaron's skin cannot stretch 40 degrees to 130 degrees. It stopped at about 85 degrees. When they tried to stretch it past that - his skin split. 

They were shocked. It never dawned on them. Sixteen year olds are supposed to have soft elastic skin. They spent a long time considering all the options. They had two hand surgeons and a plastic surgeon working together on this surgery and they brainstormed every option they could think of. They are no easy solutions. Because of the need for Aaron to be moving his elbow starting today, most of the options are not options. 

By doing a little bit of jury-rigging with a skin graft from the inside of his arm, they were able to stretch the skin to 90 degrees. That jury rigging means that Aaron's wound is not fully closed. They stapled what they could close and set up a wound vac to help with healing.

In two weeks he will come back for another skin graft. They are hoping with this graft they can gain another possible10-15 degrees. 

That would hopefully get him to 105 degrees. Not 130 but a tad better. 

It's not what we were hoping for but the fact that the surgery worked was huge!

He has a fixator on his arm which provides stability. He gets to keep that crazy device on for 6 weeks or so. EWWWWWW!!!!!


His attitude this morning has been amazing. We've already had therapy sessions and he's fighting through the breakthrough pain as we move his arm. I'm being trained on how to do it. He didn't kick me when I was working on him which was a great sign and in fact told me to do more!! WHAT????


For once in my life I am ENCOURAGING him to play on his electronics to keep his arm moving. 


That makes him very happy!!

Aaron is not despairing. Our boy is brave and he's a fighter. 


I couldn't be more proud of him. Everyone coming into his room is marveling at how well he is doing considering what he went through yesterday!!

Thank you for all your prayers. We are feeling every single one.

Monday, November 2, 2020

Brave



One word. Brave.


They just took him back. He skipped the relaxation meds they give. He was chill. Talking. At peace.


He was so ready. So hopeful.

I cried PROUD tears as they took him back.

He is so brave!



 

Friday, October 30, 2020

Ground Breaking Surgery!


Next Monday.


Aaron and I leave early early Sunday morning so he can get a COVID test at the hospital. 

(I had my COVID test this past week)

Monday is surgery.

He is nervous. 

He is excited at the idea that he may have an elbow that bends.

But he's definitely a bit stressed about the surgery and the therapy involved. 

He will be at the hospital for 5-7 days.

I'm nervous too.

This surgery has never been done before on someone with arthrogryposis which is a bit nerve-wracking. We want the best for Aaron. We want this to work so that he can have increased mobility and independence. This holds so much hope for him. It's a delicate surgery. Aaron has NO biceps and his bones are tiny and not the strongest. I'm grateful he is in the best hands possible or we would never consider this.

Leaving Mary for 5-7 days scares me. Rob tucks her into bed with me around midnight each night and I snuggle with her and keep tabs on her seizures. 

I shouldn't be nervous. We have 2 different monitors in her room and ours and she wears a seizure alarm. Rob will have access to both monitors and I will be able to watch her on one of the monitors from Philly. 

Rob is the BEST Papa in the entire world. He's better at reacting to her alarms blaring than I am. He is stronger and can carry Mary when she is seizing. He has given her more rescue meds than either of us can count. She's in the best hands possible. 

But still... Mamas have a hard time leaving their kids and Mary makes it doubly hard. She throws curve balls at us so often that we always live on high alert.


We are stepping out in faith this next week. Believing that God holds both our kids in His loving arms. Knowing that He knows what we need before we have to ask. Knowing that He will carry us through the next few weeks.

We are definitely asking for prayer.

Prayers for peace. Prayers for steady hands and wisdom for the doctors. Prayers for pain control. Prayers for Rob at home with Mary. Prayers for protection over her - especially in the night hours. 


Last Sunday, Aaron was anointed and prayed over in church. It was a precious time and we are grateful for a church body who is surrounding us with love, support and prayers.

Those prayers carry us through.

Thank you to those near and far who will be lifting Aaron up to the throne.

It's a ground breaking surgery with so much potential for both our son and others!!

I will be posting as I can next week so stay tuned...