Surgery Day - surgery

Cav really has been doing great lately with food (another post I promise)

Anyhow when they called on Friday and told me we had a noon surgery I thought it would be fine.

Even now I'm not sure if it was the food or walking into the hospital - although we love Children's.

Regardless, we got to the hospital at just after 10 and just about the time we get to the elevators I look down at him in is wheelchair and his face goes to glass.

Someone called it the survivor stare.

No matter what I tried, he didn't get out of the mood.  And oh yeah surgery was delayed an hour.

Which I never complain about since his surgeon became an expert on amputations because his primary job is as a orthopedic oncologist.  Frankly, we are blessed.  I would never rush this main who just might be saving a child's life, or comforting a mom who didn't have the luxury of choosing a child who would become an amputee.

Luckily, the anesthesiologist we got was amazing - he came in - pretend wrestled Cav (who I was afraid was going to cry but then snapped out of his funk and tried not to laugh.  Oh yeah this man kept pretend farting on him too.  I felt like I was with an overgrown 15 year old!!

We love him, he is perfect and his specialty is achondroplasia so---- we got his card LOL!  You know just encase but I really am about done with surgeries for a lifetime LOL!  I realized today in 18 months we have had 6 fairly major surgeries on 9 body parts and to many casts to count.

Anyhow, I got to spend the last hour of our wait with a happy smiling boy, tool him back to the OR and he went right to sleep without that guttural fight or flight response he has had before.  So proud of him!

I also discussed with everyone who came into the room to make sure to over drug him right after surgery, as he usually needs enough drugs to kill an elephant for pain.

And you know what THEY DID!!

PLUS< they put a block into the area!

So we ended up waiting on the nurse to scoot out of there, by the time he woke (about 10 min in recovery) he was wanting to go HOME!!

All of the other kids called him and face timed which he also loved.

So, he is now playing with the little boys, and so far so good.

I am insisting he stay home form school tomorrow although he is raring to go LOL!

As a side note - I have to say I love how God works.  His surgery is the same exact surgery they do one the dwarfs who have bowed legs.  They get the 8 plate surgery and we had a 2 plate surgery.

His doc will monitor his growth and eventually the plate and screws will need to be removed.  But let me tell you how amazing this man is.  He sutured it in a way that there is NOT a know at the end of the suture inside which might affect Cav's comfort level when he puts on his prosthetic leg in a couple of weeks.  The glued the outside of the incision so he could go into the bath.

We are praying that he will be able to comfortably wear his prosthetic and that the plate and screws are in an area where there is a little opening (because of how his fibula grew) and we don't have to have the prosthetic reconstructed.

I walked in and was horrified that Cav was on the floor -
Brahm apparently picked him up even though Cav outweighs him be 5-7 lbs LOL!
(oh and the child is denial about the pats LOL)

Cav's surgery

Tomorrow is Cav's "surprise" surgery to place 2 screws into his growth plates on the outside of his longer leg.  THis will allow the inside portion of his leg to continue to grow and hopefully straighten the tibia a little bit.

We are praying it will at least buy us some time.  Selfishly, I need the time until we get Dawson home and settled.  But also time for Cav.  The kid we anticipated would need one surgery once home is going into his fourth in two years.  And truly I know lots of kids who have gone through way more - but oh my momma heart breaks for him each time.

In addition, the recovery without a prosthetic is only 2 weeks with this surgery.  If he has to have another osteotomy (break the bone in 3 pieces and put a rod through it to straighten it out) - that's 8 weeks alone int he cast.  The poor kid already went through this 18 months ago ugh.

Lastly, he is finally getting to a point that he cares - he is self conscious about not wearing his legs.  Mind you this is the kid who puts them on when he gets up and takes them off at bedtime.  On weekends if I don't give him socks then he will go without around the house but he truly has never fought us about wearing his legs.

In the orphanage, they obviously pulled on his little feet, and taunted him.  All he ever wanted was shoes. . . even two years later I think this is still very important to him.

So please will you pray for him, for his little heart.  We tried desperately to get him able to walk with forearm crutches.  His hands are just to weak, and we have made the executive decision to only use his wheelchair.

I pray this is the right decision, he would need to stand on his full prosthetic leg which means standing on a gravity driven prosthetic knee.  Using hands that will never have the strength of "normal" hands.  Fall after fall he would get up as he practiced around the house (even though we went to 2 and 3 PT appts a week to get him where he could use the forearm crutches.)

Anyhow, please pray that the other kids don't make fun of his legs (his teacher will talk to them the day before he gets back.)  We have fun socks for him, and his wheelchair is super cute with a teddy bear "footplate".

Doing surgery once again now 2 years home does have it's advantages.  We have always scheduled early morning appts because of the food issue.  Dare I say, but I think he is past the HUGE food issues he has had (Can I get an Amen!!)  We talked extensively about his not being able to eat in the morning - and he got special McDonal's tonight so praying this is one less thing we have to worry about.

Surgery is tomorrow (Monday 1/20) at noon MST.

8/2012 in his teddy bear wheelchair

Detour

I thought I finally had it all together - we scheduled Cav to get his new legs made in Nov (you know so it would fall under our already met deductible).

Getting his leg casted for new spiderman legs!

His prosthetist suggested we make an appointment with the amputee clinic for the same day . . . and we were able to get in which was our first God sighting (and I probably should have know something was up LOL!)

I can't remember if I have mentioned this hoopty walk Cav has developed.  We first noticed it shortly after getting his arm casts off in April.  We thought it was either a bad habit or the weight of the casts had somehow changed how he felt his center of gravity was.

It just became more and more noticeable.  Our PT thought maybe it was his hip and core strength.

Heck, even the PT at the amputee clinic thought the same thing.

Yeah it took our fabulous orthopedist one look and he ordered x-rays.

TO catch newer people up Cav has Tibial Hemimilia - they were able to save, and straighten his tibia when he had amputation surgery - summer 2012.  They did this by chopping the tibia in 3 pieces, and placing a rod through it - which also meant 8 weeks in a cast which lasted 10 days before he had to be recasted - it was a VERY long summer.  We were warned he would need another osteotomy in the future but it was my impression it would be closer to middle or even high school.

NOT 18 months later.  I just wanted to cry, I was sure I was close.  When we accepted Cav's file, I read as much as I could.  I never saw anything about curving tibia's, continuous surgery AND we had no idea about the mild radial club hands or neglect, or sensory or, or, or.  My heart breaks for this kid.  God, he just needs a break - I prayed right there in that room.

They decided to do another x-ray because he hyperextends his knee backwards.

Even as a nurse I don't quite get how this makes a difference and really I DON"T CARE!!

AS I looked at the surgery schedule I realized a January surgery (the soonest he could do (heehee so much for our deductible.) would put Cav in a cast until MARCH - oh no March is when I am supposed to be getting Dawson (you know because you can plan these things LOL).  Of course he would have to be recasted for new legs after getting his cast off, and this would be another 2 weeks at least ugh

GOD I CAN'T DO THIS I WANTED TO SCREAM!!

And then we received HIS blessing.

We still have surgery scheduled for January 20th, but they are only going to do a 2 plate (usually you hear 8 plate surgery) where they place screws and a plate into the growth plate on the outer side and let the inner grow until it evens out a bit.

The second x-ray bought us time.

He will still need the osteotomy within the next 2 years.  So please keep him in your prayers.  He asked if we were going to take the rest of that leg.  We assured him we weren't and it wouldn't look any different.  But my heart breaks for him - he meets every challenge head on and I know he will do amazing but it's a lot.

He will be 2 weeks without his prosthetic.  They think he should be able to use forearm crutches (mainly because the weakness in his hands.)  THey will lock the prosthetic knee and they think he will be fine.  PLEASE specifically pray for no snow or ice during the end of January.  We do have his wheelchair (and scored the next size up at goodwill last night for $30!!) but the concern is without the physical activity his sensory issues will raise it's ugly head.

For those who are freaks like me here is the second x-ray.  You can see the pressure indent just above the white circle.  This shows how the forces of his leg and alignment are off and how much his center of gravity is off (I think that's right.)

Sunday Snapshot - {First Steps}

It has been a very busy week but although we have celebrated many firsts and birthdays - Cav's new legs and his very first steps EVER has been the highlight!

Very photo heavy but it was a pretty incredible day!

I think I love this photo the best -

The pure innocence as

 Cav checks out his new leg, 

& first pair of shoes EVER!

Daddy got light up shoes - we thought he MIGHT need an incentive - we were wrong LOL!

Another favorite - waiting!

I can do it!

Momma, you see!

See Momma!

Other side

SO excited he is up!

Stand up straight big guy!

AS you saw in the videos in my last post, I quickly realized the camera needed to be put away and the video used instead - our boy waited his whole life for this, and he was off!

We had to go over to Children's after to x-ray and see our favorite Dr.  Just a slight adjustment needed

BUT Cav was tall enough to play with the busy beads and he was so thrilled with himself!

We still have to learn how to sit and get up!

Canon 5D - 50 mm lens since all their rooms are dark interior rooms.

Believe in Miracles

This whole process with Cav has reminded of me of the days of Jesus when he touched and healed.
 I know in this day and age we so often forget that God is present WITH us.
That Miracles happen EVERY single Day.

TODAY, well,
today was our day.
We have seen many blessings on our journey,
we have even seen some miracles,
but today was all God.
Today we touched Jesus's cloak,
AND today our son walked.

Now that statement alone brings tears to my eyes but let me tell you what the difference is. . .

This is a child who was never supposed to stand,
he had no tibia on the short side and minimal tibia on the long,
stood at his crib rails.
Our son didn't experience life before Dec,
and now he plays freely in the grass.
Our son was an outcast,
who had no future,
but he must have watched,
and learned,
and well the glory is all HIS.

In all his years of being a prosthetist,
no one had ever seen someone just get up,
and WALK!

They grabbed the iPhones,
they cheered,
and well, we praised His glory through our tears!

And if you want to see how wild he was after jsut about 20 minutes on his new legs (this is longer) and please ignore his mother's loud voice ugh!

Rearview mirror

Last week jsut was a bad, bad, very bad week!  We were under such spiritual warfare, I came to my breaking point - you know the one where you ugly cry in public. . . yeah that was attractive and gave those who carefully watch us, even more conviction why not to adopt.

But we are back to our cheery selves loving life, our family and God.

Sunday started with our annual church in the park - we all love it ~ and who wouldn't listening to the wind blow through the pine trees, sitting with our family and friends praying.  It changed my bad attitude of reviewing the wrongs in my life.

Cav had surgery to remove the rods yesterday morning.  I dropped Cav off and ran back to the room to checkout while he had his 1 1/2 hr surgery.  Not even 10 min later I get a call from the hospital (which I missed . . . BAD mom!) that the surgeon needed to talk to me.  I was panicked that Cav was going to need a skin graft over his amputation site that has been infected and jsut plain nasty.  NOPE - he was done.  All that prayer healed his site and there is jsut a little bit left unhealed.  The rods came right out and we left the hospital at exactly 10 am - the same time he was supposed to get out of surgery.  This boy is a rockstar!!

And he is thrilled the only color they had for his wrap was PINK!

Although I am pretty open here I have not mentioned the issues I have had with extended family (ok except the perfection post.)  Anyhow this summer has been hard, harder than I have experienced in the past.  I have had to realize that boundaries I have let slide for years, need to be put into place.  I am typically a pushover - um but frankly when you have a little boy who has lost everything in the world, not acknowledging him on the day he loses his legs is incomprehensible.   Ok, I only tell you this because truly God's grace was magnificent yesterday.

Cav received this darling little tiger from a grandma (an AP's mom) in New Zealand.  I got it last week so I kept it for his surgery and he loved it!  So amazing to see people who have met our son once love on him.  Anyhow, in recovery (as I was checking my phone in hopes that the illusive text might appear this time) in came Cav's nurse.  I jsut laughed at God's humor when she opened her mouth.  YEP, she was from New Zealand!  Can you see the Godwink?  Maybe, jsut maybe we need to acknowledge the love from those around us instead of looking in the rearview mirror and hoping.

Plethora

As I review the past week - for that matter the past year - I stand in awe.

My phone literally binged so much even the nurses referred to it as the prayer phone!!

We had so many texts, emails, facebook wishes I was floored.  

Best of all jsut the ding of my phone alone rose my eyes up and filled my heart!

Isn't he so cute!!

We even had people drive the 3-5 hours roundtrip to come visit us!?!  Just crazy 

Yeah, he is now 4, and been around mommy enough

 to make stupid faces when he sees the camera LOL!

Cav received cards from the Sunday school and a darling poster,

A friend brought us 4 . . . YES FOUR! of our favorite chicken alfredo's.  

We have so many dinners, I am going to have to start freezing - 

even our chickens are blessing us with extra eggs!

He loved his fabulous "speedy recovery" cookie bouquet (of course so did his siblings!!)

Everyone of our children have had a scheduled playdate - this has been such a blessing allowing for time to nap and care for just Cav.

Although the plethora of items is incredible, truly I stand in amazement at the love people have for these kids who once had no value.

Please keep little man in your prayers, he had trouble with vomiting today which meant he went most of the day without much medication.  I was pretty worried, and jsut about the time I was figuring out a hospital run, he ate some of his comfort food (oatmeal with milk is about as close as I can get to congee LOL!)

Rockstar

Cav's day started out pretty difficult. He was unable to keep anything down so we delayed pulling the epidural. Just a few short hours later we discovered he had wiggled so much in bed that the covering over the epidural site has come up. The only option was to the epidural - no weaning, but lots of prayers

Then as we waited for the pain team arrive - Cav looked at me and said 'Ma, I hungry!'. Yeah! He did great the rest of the afternoon. We are experiencing some pain but I won't let it go untreated.

Again this kid amazes me - we got his wheelchair and this is first attempt using it and he is a rock star!!

Recovery

These are my thoughts - documenting this journey - I am not even sure if they are worth posting but I want to keep them for when Cav is older. I finally got called back to the recovery and I was amazed, not only did I recognize my child svoice, but he was screaming mommy! Music to my ears. I was able to sit by his side and comfort him, to dry his tears. In the brightly lit room surrounded by strangers and equipment I was his oasis. He cried loudly, his little leg owied and then the words that stung the most. "put my leg back." Finally, more drugs and he is sleeping. I sit in the quiet of an almost empty PACU, I find the beeping monitors strangely calming. Probably from years of working in the NICU. Waiting for the morphin to wear off,but glad he is sleeping, no longer aware of the pain his body is experiencing. It saddens me to think that for the fortunate children who receive surgery while still in china, few have someone at their side. Although we are not people who like to be the center of attention, cav's adoption seems to affect others - ordinary people. Even here in a hospital where the hallways are filled with children of varying special needs, Cavand his story is touching people's souls. How many times have I repeated that we are just ordinary people. I do wonder the results of his story though. Is this the heart you were meant to change. How will your story play out, years down the road. And then it comes full circle to one family saying yes to one little boy. How many other children will God use . . . Today, this week, this year. How many other families will see past the disability to the path of faith they are meant to follow.

Amputation surgery

It is 11:30 and i sit here embarrassingly at peace. I even questioned - is it because Cav is adopted. To some extent the answer is . . . Yes. But not because I love this wild child any less than my other children. But because as I laid him on the gurney I felt as if I was laying him into God's hands. This child in particular has always been His - it still amazes me a child who meant nothing in his homeland has had such a dramatic impact on ours. As a side note - cav's little leg was already gone by our first call from the OR at 10. As I was typing this they came out and are just now closing on his second leg. I believe he has ended up with a - Through the knee amputation on the right A Symes amputation on the left And a tibial osteotomy on the left. The left will be casted and we think the right will have a pressure dressing. And now is the calm before the storm. We have been receiving texts, calls, and messages from all over the world today - THANK YOU!

God's timing

As I watch this child sleep in a huge hotel bed just across the street from Denver children's hospital - and of course the quietness of having just him, I realized something. Yet again I must marvel at God's perfect timing. Almost four years to the day of his finding he will have surgery. Four years ago as I held my sweet little 1 year old (Brahm) another mother spent this week fretting over her tiny babies deformed legs. Although we can romanticize the story, truthfully I have very limited information. He was about a month old He was found in a chair in the hospital He was listed for international adoption at 16 months We sent LOI in on his 3 rd birthday He will have surgery 1 week to the day of when he was found. To a child who's birthday is most likely not even right, the date if his finding is huge. He survived and in Cav's case his mother took an incredibly risk to ensure he was found quickly, and would (I am sure she hoped) receive the care she could not afford. As a side note, we were able to find a molding kit for at least his little leg. This is his foot with only 4 toes, and completely non weight bearing. I hope when he is older and questions his path we can show him a small glimpse of what came before. Of course Brahm came up with the idea. As a final note - I spent so much of last year with people questioning how adopting would affect our children. I have never been prouder of them. Even our biggest gave him extra hugs before going back home from the lacrosse tournament. We have always explained to them that this is God's plan and it is a wonderful first step to him walking. But their compassion for a child they truly just met astounds me.

Watching Cav

I have had a ton of questions about Cav.  Also since we are jsut weeks out from his amputation surgery I wanted to document his before movement.  Remeber this kid who was terrified of plants when we received him, and had probably been outside TWICE in his entire 3 years in China.

I can partially understand keeping inside - he started the day with completely intact pants!  Goodwill LOVES us as his pants last one maybe two times.  I guess it cuts down on laundry LOL!

I wanted to share for those who might be contemplating a child with significant limb difference.  We believe he will do phenomenal once he has his new legs (and shoes LOL!)  As a matter of fact my other little guy in the video has dwarfism so really . . . so much for disabilities!

On our Way!

Another crazy day - the kids had a SNOW day!!  

Gotta LOVE Colorado!  

The kids traded their swimsuits for syrup drenched snow!

But that's not what today was about -

TODAY was about Cav's journey to walking.

You know your reality has changed when you walk into a room where legs and arms 

are stacked like cord wood!

Atleast there was a jungle gym for my naughty boys!

I brought little man because he has had so many questions - 

I was excited to show Cav the pictures and how he would soon walk!

And then we learned a little nugget about Cav- 

He seems excited about getting his new legs!

So HE can have real SHOES!!

OK dude, we will go shoe shopping for you just as soon as you get fitted for your real legs!

Truthfully though, and I am not sure if it is the time of year, or because we are doing the book of Mark for bible study but I realized something.  Although we yearn to walk with Jesus (literally) and touching his cloak so as to heal- THIS is Him still producing His miracles and I stand in awe!