The Other Kind of Day

From the last post about abundance to today where I'm at a point so overwhelmed my cheeks flush red and I cannot think straight, we just may have a study in opposites.
At one moment today, I dropped my head down on the nurse's desk just to try and take it all in.
We are going to survive.

"Jesus is here with me now, and NONE of this was a surprise." I reminded myself. I was sitting in the audiology department getting the news that Zeb hears nothing out of his right ear. And that it is most likely fixable, but we need to get him into a specialist NEXT WEEK. And that we are most likely looking at surgery. A tube. Nothing big.
But at that moment, it FELT big.
All the fundraising, the house changes, the details to bring Esty home...and then the fall that Toby took the night before was simply TOO MUCH in that moment.
I borrowed this sweet woman's desk space and dropped my head down for a brief prayer, "Jesus, help!"
I hadn't slept much last night. At all.
We'd been keeping the sweetest three girls while their mom and dad are out of the country working on bringing their brothers home from their orphanage. It was a crazy fun fest of NINE children last night. Dinner was over and everyone was engaged and it was, well, LOUD.
Then the screams.
"Mommy!! TOBY FELL!"
I ran to him.
I held him and he was indeed quite upset.  My eyes and hands investigating him for what in the past has proven to be a bloody mess…or a broken bone. I asked him where he hurt and he managed to say, "Arm!" Of course I suspected his arm that he had surgery on…but he used that arm and sweet crooked finger to point to the straight one.
The arm that is in a permanently straight position thanks to his Arthrogryposis Multiplex Congenita. 
The arm that was now swelling furiously at the elbow and the arm that now bent.\
{grimace}
I think perhaps I have fluttered around ever since that moment…running off to the ER with him, going to bat for him as the physician on call told me "all his bones look great! nothing is broken!" KNOWING FULL WELL this was not right and the doctor was wrong.

Toby refusing to look at the camera because he hurt so badly. :(

I'd asked the doctor if he'd ever heard of Arthrogryposis. 
He hadn't.
(I hadn't either, remember. But now, I've lived with this blessing of a child for 8 months, and I know Arthrogryposis. And his arm IS broken.)
They decided to splint him "anyway."
Hmmm…Good!
This morning, after a very restless night of sleep, I called our local orthopedic office. Our doctor who had treated Toby before (for this SAME injury on this SAME arm) was in surgery. He would have a look at the X-rays and call me in between patients.
Later this morning I got a call that made my mouth drop open: "the doctor says there are no breaks, and he sees no reason for an appointment."
I was stunned.
Toby HURTS. And I know this kid…when his arm bends SOMETHING IS WRONG.
I told the nurse this. But I got no where. Mama bear rose up and I told her I'd be contacting our Arthrogryposis specialists at Shriner's.
Goodbye.
Red cheeks. Steam fuming. I was M-A-D. To not even see my child for an exam?!!??!?!
A few hours later I was on the phone with our AMC hand specialist, Dr. Zlotolow. He absolutely agreed that it was inexcusable for a doctor to refuse a patient who had sustained an injury like this. He said that Toby's elbows are mostly cartilage and scar-like tissue and that it will not show up on an Xray. But that if his arm was bending, something was DEFINITELY broken. (and oh the pain in my sweet boy who can withstand SO MUCH!!)
Dr. Z spent a good TWENTY MINUTES on the phone with me. We discussed all the possible doctors who might be able to give him a proper assessment (including a dye injected Xray to show the cartilage) so we can understand if his elbow needs pinned…or even if we might take advantage of this break to HELP Toby's hand position on the left side.
WHAT. A. DOCTOR!!!
He searched for our hometown and went through every possible doctor in a 5 hour driving radius that he knew personally and trusted to give him an accurate understanding of what Toby's situation. We finally decided on a particular doctor at Children's hospital in Cincinnati.
And he told me to get him there THIS WEEK.
I tried calling for an appointment on my way to Zeb's hearing appointment. The wait time was too long…I got started, but had to go as it was time to go in for the hearing assessment.
Then the news that Zeb doesn't hear and may need surgery ASAP.
Head drop to the desk.
"Help Jesus!"
And He has.
Miraculously, the very doctor that Dr. Z wanted us to see is available TOMORROW afternoon (giving us plenty of time to make the long trip) and he "happened" to be in the most northern located office of the ones he serves. 
Thank You, Jesus!
I was able to schedule Zeb for the specialist this coming MONDAY for his ear. Wow.
Thank You, Jesus!
We ARE gonna make it. 
And my guess? Jesus is gonna get some mo' glory!!
Till then, will you pray? I need sleep, safety traveling, wisdom for doctors and decisions for both boys, spiritual protection...and we need Esty home.
Thank you, friends.

Toby's Surgical Outcome

Wow! Thank you for the outpouring of love and prayers on behalf of Toby as he had surgery!

HE IS DOING AMAZING!!!

I just took this, 2 days post op, for this post. Can you believe him?!?!?!

Surgery lasted 4 hours. First Dr. R began with the circumcision. This went smoothly. Then Dr. Z came in and started with the toe removal. Then he began on his arm.

This was a big deal.

First order of business was to rotate his arm. You see, his shoulders are internally rotated making his hand in a backward position (on top of his wrists being severely bent). Surgeries to alter the shoulder have been highly unsuccessful, but they have discovered that it is working to cut the humorous in half, rotate the lower part of the arm into the correct position and then put pins or plates in to hold it. (Toby has permanent plates.) They did this just above his elbow.

Then, they did an elbow release. This involved cutting tendons, moving nerves and then making slices in his tricep muscles to lengthen them. The way it was, the arm still would be unable to move due to the tight muscle that has never been used.

Are you grossed out yet? Yeah. I know.

Then they cast that arm in a 90 degree position.

He got his fingers in his mouth for the FIRST TIME EVER!!!

He can actually reach his left ear with his right arm!! (not without help)

This is in the recovery room. His face was very swollen and he didn't look like himself.













As is common with AMC kids, they were unable to get a good vein for an IV in either his hand or foot. (his poor foot is all bruised and I can see they tried 5x to get one in!) So it was in his neck. :(

While in the hospital...we did very little.

Lots of sitting and holding. And trying not to cry.

But Toby is a fighter. And although he wasn't happy, he didn't cry that first night.

He had me sleep in his bed to comfort him and he worked on a new position about every ten minutes, but the boy did not cry all night.

We were incredibly blessed to share a room with our good friends Gideon and his dear mommy! They made the entire experience amazing with their company and all their helpful AMC wisdom! We even got to meet up with  3rd Chinese AMC adoptive mommy however they were on their way out and it was much too short a visit! Next time!

Toby borrowed Gideon's iPad while Mommy grabbed a shower. With his dominant hand occupied, he resorted to his good foot for iPad playing:

This is how he looked by yesterday afternoon when it was time to go to the airport:

A study in pitiful.

But he immediately perked up when we saw our friends who graciously picked us up and drove us to the New Jersey airport.

And he so mercifully slept on the flight home to Ohio.

And then we were back at Grandpa and Grandma's house for the night. He started to smile once again. What a joy!!

The only snag was that his high powered pain killer exploded in our suitcase and he never got a drop. He's been only on regular children's Tylenol.

And now you say: WOW!!!!!!!!

He traveled home to our house well (a 3 hour trip) and began to eat once he was back safe at home. (I thought that was so interesting!)

This boy is SUCH an amazing child. I cannot fathom doing all he is just 2 days out of surgery. Isn't he AMAZING!??!?!

Now the outcome of his arm surgery is not yet determined. The GOAL is that his arm will return to a straight position and then be able to press against something to bend.

Reality could be different. He could become locked up in the new 90 degree position. He could get a small range of motion.

There is a very teeny, tiny chance that he could get an active bend in his arm. (Meaning he could draw his arm up on his own.) But the report from the doctor is that his muscles are not healthy and deep red but rather a salmon color, indicating that he will most likely not.

We return to Shriner's in Philadelphia in just two weeks for post op and therapy. This will be several days of twice daily work to use the arm in it's new way.

In the middle of our experience, another Chinese adoptive family...just a few miles away from us in Philadelphia...lost their precious daughter when she did not make it through her final heart surgery. We (Gideon's mommy and I) had knelt and prayed for them before we learned the outcome. This was a last ditch effort to keep her alive until another donor heart became available. It was so sad to learn that they handed her to her parents to hold her while she left this earth. There is no way to sum up the blessing these Chinese children are to our families.

There was someone who told us while we were fundraising to bring Toby home that he was better off in his orphanage and that we should leave him there. I cannot fathom where this person was coming from to say such a thing, but all I know is he was DEAD WRONG. There is no honor on this planet like being Toby's family and this AMC journey is such a blessing. The joy his smiles and laughter bring are worth every ounce of effort we pour into him. We are counted blessed by the Lord to be chosen to be his family.

Thank you for your prayers for our sweet boy as he went through this! I ask that you continue to pray for him as he adjusts and learns to use his arm, especially as we begin therapy in the next few weeks!

Next Stop...Philly for Surgery!

Heading out today to Philadelphia Shriner's for Toby's BIG SURGERY!

Please be praying for our boy as he has so much done tomorrow--July 1st! Surgery is first thing in the morning...and we will be flying home the very next day.

Please pray for him to travel well. He hasn't done very well in the past, and I can only imagine when he is in such pain.

I expect him to be quite frustrated as the arm he favors will be the one now cast and rendered useless for the next weeks.

Thankful for your intercession!!!

Toby's Diagnosis of Arthryogryposis Multiplex Congenita

We knew when first fell in love with Toby that he had AMC or Arthrogyposis Multiplex Congenita.

We did the research and decided that YES we would take this on.

What is AMC?

I'm glad you asked. Especially because this month (June) is AMC awareness month!

From the May 2013 AMC Picnic in Ohio. Pictured are all the individuals affected with AMC. (plus me b/c Toby wouldn't stand with strangers!)

Arthro means "joint"

Gryposis means "crooked"

Multiplex means it occurs in different joints anywhere in the body and is unique to each individual

Congenita means present at birth.

Whew! What does that look like in real life?

Well, it looks VERY different for different people.

Sometimes all joints are affected. This means that the child/adult is completely wheelchair bound and must control it by their chin.

Sometimes it only affects their lower extremities. Club feet are common and scoliosis can occur. If the lowers are affected, it usually means years of therapies, casting, and surgeries to get to a level of mobility.

This mobility is different for each person. Some are able to walk with a limp, an irregular gait or even a hunch. Some use walkers. Some are able to walk smoothly.

Some people are affected only in the uppers. This is how our Toby is affected. It was such a shock to us when we learned last summer from his orphanage that he could walk! (We actually didn't believe it at first!)

We had an amazing time meeting other families affected by AMC at the big "meet up" held in our very own beloved hometown of Westerville, Ohio.

A sweet friend, Jenny, adopted from South Korea as a child because of her AMC. She now can walk but also uses a wheelchair. She is SUCH a sweetheart! Working on her PhD!!

My dear friend Jackie with adopted son, Gideon. Jackie shared with me all about AMC and what it would mean for me as a parent if we said YES to Toby's adoption. Gideon is affected in both the uppers and lowers.

I snagged this photo op with the well known Tracey Schalk--a key spokeswoman for AMC. She is uber sweet!!!
Tracey lives alone and drives a car.  She is affected in nearly every joint. She can do ANYTHING!

Having this incredible network of AMC'ers has been awesome. I learned early on that we need to be going out to the Shriner's Hospital for Children to see Dr.s van Bosse and Zlotolow who are the nation's best in AMC treatment.

Toby and I did that just last week.

My traveling companion. He's pretty cute, huh?

 We traveled on two planes to reach Philadelphia. We used Miracle Flights for Kids that helps children with medical needs get to their necessary hospitals. They were great!!!

Once we reached Philly, we had an amazing picnic with fellow adoptive families in the Philly area. It was SUCH a blessing! I learned a lot about Russian adoption and met some fabulous new friends!

One incredible meeting was face to face with Kelly who advocated for Toby on her blog. It was a really emotionally beautiful thing to introduce this precious orphan to her...we both got teary!

You are right, we aren't looking very teary here. We had moved on to laughing! :)

The next day, it was time to go to Shriner's.

AMAZING place.

Those men with their caps...I never paid much attention to them all my life.

Now, I am SO THANKFUL for what they have been doing.

Did you know that after your insurance, Shriner's pays EVERYTHING?  They work hard so that there is no extra financial hardship on the families.

INCREDIBLE.

Waiting in our room to have different doctors come and visit Toby.  p.s. He does ALOT with his feet that he cannot do with his hands! ;)

 We were treated so lovingly and saw doctor after doctor and went for some pretty crazy and creatively shot X-rays! They sure know how to work with children!

Amazingly, we were done by noon!!

They sent in the clowns! Shriner's are known for their great clowns!

Playing at the train table with friends.

Look who showed up in Philly too! Our buddy Gideon from Kentucky! AWESOME!!

The diagnosis Toby received from Dr. van Bosse was that his type of AMC is Amyoplasia. This type is fairly common among AMCers and is non genetic. It is thought that it is due to a lack of oxygen in the spine during the first 11 weeks of pregnancy.

Shockingly, 90-95% of the amyoplasia type of AMCers are affected in the lowers. 

Toby is in the 5-10% who only are affected in the uppers.

Another moment where I was just amazed.

When Dr. Zlotolow (upper specialist) came in and saw Toby, he remarked in awe, "This is the 3rd patient I've seen now only affected in the uppers but missing toes on a foot. I HAVE to think there is a connection."

Wow. There is still much the medical community does not know about AMC.

We learned that Toby is missing some muscles and other muscles are very atrophied. Due to lack of fetal movement in the womb, these joints "freeze" or contract. He has internally rotated shoulders, locked elbows with about a 30 degree range in one arm and both wrists contracted and adducted thumbs and the tendons in 6 of his fingers are so tight that they cannot be straightened.

Dr. Z determined that to begin help Toby become independent, he needs to have surgery to enhance his favored arm. He will have what is called a rotational osteotomy on his upper arm as well as an elbow release. He wants to have it done before he turns 3.

That means now.

The goal will be to get his hand to his mouth so he will be able to feed himself.

We are scheduled for July 1st.

I ask that you be in prayer for Toby as he faces a multi-faceted surgery on that date. Pray for me to as he was not the easiest little guy with whom to travel!

I Can't Seem to Finis...

I currently have TEN started drafts for this blog.

TEN.

That seems excessive to me.

I have more than that started in my head of course...and their next step is to make it to my iPhone to do list for "this month." Then I grab a 1/2 second and begin to write...only to be interup...

So you see, I am seriously backlogged.

But I am determined to finish this post about NOT finishing!!

I have valid reasons for my scatteredness, really.

Source

*Health issues in myself, DQ and Zeb (we are battling the leftovers from a stupid parasite that he came home from Uganda with 15 months ago!). This has been going on for me since late July. Just when I think it's over...its back. Poo! (oh yes, pun intended!) 

*My father in law's sudden fall at our house and subsequent emergency brain surgery and 2 weeks hospitalization.

*Brian's spontaneous lung collapsing and subsequent surgery and 10 days hospitalization.

*Zeb's tonsillectomy and adenoidectomy yesterday morning...and what is looking like a not fun recovery.

*Financial stress from all of the above.

*Regular life does not slow down so we can attend to the above!

And so, I have let sitting and blogging go to the wayside.

I miss it. I miss you.

I still am living life as passionate as before...but I don't have the freedom brain cells left to use my venue to express it!

Still aching for orphans who need families.

Still wanting to get overseas to rescue children from brothels.

Still working out daily and eating healthy and challenging others to do the same.

Still having awesome conversations with friends who mean so much to me...and being challenged in my faith by them.

But I cannot seem to find a square inch of space in my day energy to sit and write.

So today, I'm grabbing this moment to simply write about my frustration of not being able to fin...