Gyro-Stim update - Did it work?

That's the question we get over and over.

I just couldn't post

A part of me just didn't want to get my hopes up - I know that sounds odd BUT how many times over the last 4 years have we had some hope for it to be dashed.

In addition, his therapist had warned we were getting close to residential treatment.  I think deep down that thought scared me so much that I felt I was standing on the edge of a cliff and afraid if I breathed wrong we would go over.

BUT we have been long enough out of treatment, and past the mark where any brain rewiring would occur that I believe I can start to hope.

Even my very stoic husband looked at me one day and said "what happened to him."  Everything from Cav's voice to his facial appearance has changed.  Friends have noticed it, his teachers have noticed it, and most importantly the kids have.

In school he had no friends (not for a lack of trying on their part - they wanted to love him but he would be mean or hurt them.)  He had to sit by himself at lunch and in the classroom (again not a lack of trying on everyone's part).  And at home he never was able to play with the kids longer than 20 minutes before he was raging or someone was bleeding.  He couldn't be around our littles anymore without strict supervision because of harm he caused them.  Really, we were at a point where I was wondering if he had been better off in the orphanage - and that statement goes against ever fiber of my being.

In one word we were DESPERATE!

I have to admit that I am also MAD - how have I never heard about the vestibular system, why after all those therapies did no one treat that area?

ANYHOW - here is what our life looks like now.

We made the mistake of doing the process over Valentine's Day and a day off of school.  This was a disruption in our routine and lost some hope because he went back to his typical of stealing, raging etc.  In hindsight he always has had a hard time with holidays.

We ended the treatments in February (it was 7 treatments over 3 weeks.)

The beginning of March is when my husband made the comment - and try it was like having a new boy.  I even caught myself thinking - I actually like this kid.  He is funny and charming.

I went back and forth on what to do for our spring break - as we had the opportunity to attend a disability ski weekend.  Truly in the last 4 years Cav has not done much - he screams or rages every time we go out in public so we have found it better for him and our sanity to leave him home with a sitter.  BUT it broke my heart each time the trauma wore off of his latest action.  (and before you comment let me give you a visual - My very large husband having to carry a screaming chinese kid through IKEA where there is no quick exit, all the while he is flinging his titanium legs at anything he can get close too.  I am trying to calm the other kids and get them out. - NOT a fun Sunday afternoon for anyone.)

So we signed him up along with 3 of the other kids.  He had been acting so good.  And considering the circumstances he actually did pretty well on the trip.  We had some regression and hiccups.  BUT when we left to come home together I saw a change in him, a peace almost.  It's hard to explain but thinking back I am wondering if the hiccups were due to him being worried that he was going away for treatment.

Then we arrived home from Skiing and headed right into Easter - I do NOT know what it has been about Easter that has set this kid off - BUT he has never been able to make it to the family egg hunt.  He would be in his room raging by noon EVERY YEAR!  But this year he did it!!  It got to hunt for egg, and enjoy the whole day with the family!!

It has been 2 weeks since then and we still see a new kid.  It has been odd though - it's like he missed the last 4 years and is just now waking up from a fog.  Things he will ask are like a preschooler.  Socially, the mistakes he is making (primarily at school) again like a preschooler.  The lucky thing is he is grasping the rules and the why's and quickly accommodating his behavior to that.

Another blessing is the kids in his class are holding him accountable - God really has answered that prayer and the walls and boundaries are clear as day to him.

As for home life - he is not hoarding food for the most part.  He is finally grasping the fact that the fruit tower on the table is available anytime, as is the rice that is always in the cooker.  The greatest change is his awareness that there are others around him.  I almost sat int he driveway and cried when I saw him take Remy's hand, and gently guide him into the house.  In the past he would walk in front of others, knocking them over or even pushing them.

We still have a long way to go - but we are finding a boy we never knew existed.  One that wants to help, to be around the family.  A hard worker that also wants to go out and play with his brothers.  The best part is - he has had some consequences over the last 2 weeks for making poor choices.  He has been able to handle those and move on versus the downward spiral that would last weeks and months.

Although I didn't want to admit it - Gyro-stim changed our life for the better!!

Freedom

I think I blogged about Camp No limits we went to in Janurary.  Cav was able to try out a set of running blades there and in typical Cav fashion he was running on his own in 3 passes.  

HE LOVED THEM!!

Unfortunately they are $20,000 A PIECE.

And insurance deems them cosmetic.

I don't care whether we are adopting again or not, I just can't justify $40,000 for running blades.

Anyhow, Colorado offers a running clinic through Hangar prosthetics

we went last year.

It was great but almost everyone there has a "good leg"

blah, blah, push off with your good leg etc.

In addition, if they were bilateral, they had their own knees.

It was frustrating for him, and for me.

With Cav's history he WANTS to run, 

BEING AN AMPUTEE doesn't make Cav different,

His inability to RUN makes him different.

When the people from Hangar called this year I told them flat out, 

I couldn't subject Cav to knowing he can run with blades 

but us not being able to acquire a pair for him yet. 

(we missed the grant application which ended in Dec.)

The nicest woman - who puts on this event took it upon herself to beg, borrow and plead for a pair of running blades for Cav.

We went from a pair being donated, to the only pediatric pair were in Iceland?!?!

They finally were able to pull an adult pair (similar to what he had tried before) 

OFF the production line for him!!

When we arrived - they were waiting for him to rebuild his legs so he could also run.

Many said he couldn't because these were for 120 lb person and Cav is 48 lbs.

I told them to give him a chance.

He smiled,

He RAN,

He beamed!!

(we are praying that we can get him a pair in the next few months that are made for his weight.)

This sweet puppy is 5 mod old and Tao LOVED her!

Finding Grace

God has really been working on us over the past 6 months and finally I was brought to my knees and God and I had a heart to heart.  My cries that NO - I am not going one more step forward until HE gave us answers for Cav.

We are talking on my knees,

screaming at God,

WHY GOD!

Are we to stupid to give up,

I know for a fact that YOU God sent us to this child,

but I can NOT,

NOT,

NOT,

do this alone.

My heart aches for this child,

he plays by himself,

he is always angry, or raging, this is no way for a child to live.

I want to see him smile God.

I want him to be able to play with the other kids.

And on, and on, and on.

And finally. . . 

Our prayers have been answered.

THREE LONG YEARS later.

Am I mad as hell that the answer could be found in a bottle,

that No one else thought to try this when he first came home and raged for more hours than he didn't.

BUT I have to believe that there is a reason,

that God has buffered our boys heart.

So we are cautiously optimistic that we are on the right path.

And the change in Cav has been shocking.

Even his dad mentioned his facial features have even changed!!

We also did the MTHFR test - we haven't started treating it but Cav tested positive for both cardiac AND neurologic.  It explains MANY, MANY things including the odd smell to his urine, and even blood.  He does NOT break down folic acid AT ALL!

I tell you this because I don't want someone else to have to go through 3 years of hell trying to find an answer.

Can you see the glow!!

 

Halloween catch up

Not sure if JBF - just between friends - sale is national but man I love that sale!!  Sell old items, barter for an early shopping pass and buy amazing items!!

Besides getting lots of school uniforms for our kiddos attending the Mandarin immersion school - I found all of these except Fei's (well she got a beautiful snow white costume but that didn't meet the theme.)

Heehee Dawson's English teacher pulled me aside a few days before Halloween as he told her we made him a potato LOL!

And Morgan went with all of her friends - who were all princess's.  I just couldn't see spending tons of money and time making a ball gown she would wear once so this was our compromise - Belle before!

Halloween was a crazy day - as our family has gotten bigger, I have had to change how I do things.  

I have backed down to being room mom for only one class. 

 I was super excited to help out my friend whose daughter is in the am class because they were IN CHINA getting their son!!  So two parties for preschool meant missing the harvest fest at the mandarin school but we sent "pumpkin" cups made from butterscotch pudding and green airheads for stems (apparently I didn't get an pics LOL!)

 Tao and Cav's class got mummies made from squeezey apple sauce and were super cute 

We also changed up how we did Halloween - I know horrors.  Our oldest had a football game at 7 pm (2 hours away)  In addition, because we have so many food and begging issues with Cav and Fei we thought having them go to doors beg for food and get candy was … well. . . insane.

So I got them pizza, made them each up a treat basket with candy, bracelets, pencils etc and they got a NEW movie.  Plus kettle corn because our Chinese kids especially LOVE popcorn LOL!

It was a crazy hard decision but ultimately they loved it, we got to go to the game and watch our oldest, and Brahm got to be ball boy for the varsity game!

Tak is #53!

From Calamity to calm

I know I have been lacking on the blogging front  - severely -
and you know why . . . . because it is actually GOOD!

We found some homeopathic medication for Cav that reduces anxiety, by the end of the summer I was at my wits end with the constant rages.  Imagine your worst 2 year old temper tantrum EVER and then times that by 20 a day.

So I was ready to quit (but since somehow that is not on the mother's list of options) I was trying everything that possibly worked for anyone on my FB groups for really hard kids.  I bought books, I researched treatments, I talked to EMDR specialists.  THen we tried the L-theanine supplements (whole foods)

A week later we experienced our FIRST sunday as a family where we didn't have a fit - NOT one.  My husband looked at me with wide eyes and said "I don't want to mention it BUT I think those meds are working!!"

That was August and 2 months later I think we are finally in a place of being able to enjoy our whole family.

I feel really bad knowing almost all of his issues - to the point others advised he may have high functioning autism - were almost exclusively based upon anxiety.  Hmmm, it makes sense though.

I am NOT saying its unicorns and rainbows but can I tell you the first time he actually cried - a heartfelt normal cry - I bawled.

It's really hard to think he has been here almost 3 years.  In many ways it has flown by - in others it has grown and stretched me in ways I could NEVER have thought possible.  Adoption IS about growth - MINE.

So we moved several of our kids to the mandarin immersion school - we left Cav at the K-12 down the street.  I am not sure I ever mentioned but he developed a lateral lisp learning english so he receives speech therapy.  In addition, because Cav was alingual until we got him at 3.5 years there is an expectation that he will have comprehension issues as school work get harder.  And frankly - his life in China sucked (I am so sorry but there is no other word).  

So he basically is in the elementary school by himself, and I believe not having siblings around all the time has also decreased his stress.

However, as with any child, first grade is hard.  He is actually pretty darn smart in math which we are so excited for him!  However, the independence of 1st grade is causing some issues.  I love his teacher as she is willing to be educated and so she has implemented boundaries for him, encourages adults not to be his only social interaction.

There are many parts that break my heart for him.  We often talk through how to act around the other kids at school.  Thankfully the kids treat him no different (except when appropriate) due to his legs.  We went back to school and they all came running, excited to see him after the summer, and he just blew most of them off.  

Tao is 2 years younger but still higher developmentally than Cav.  It's both good and I am sure hard to have this tiny terror who has all the social skills Cav does not.

On the leg front - we were fortunate to meet the man who designed the tail for Dolphin Tale.  He actually felt Cav could handle a hydraulic knee.  In classic Cav fashion he learned to walk on the thing in about 3 passes of the room.  He also was so responsible and took his legs off before going into the sandbox.  So in September when he couldn't even walk anymore we were at a loss.  A trip to Denver to see our leg man resulted in a blown hydraulic cylinder ugh - really Cav 3 months LOL!  THe unfortunate part is the only tool in the US is broken so they had to send it to Germany.  Luckily they sent us a loaner!!

So continue to pray for this boy of ours.  He is proof that there is definite redemption in adoption but the cost can be so high with some of our kids.

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.)

Blessed

What a Blessed day we spent yesterday.

It was Tao's first Halloween and that boy is a rockstar.  None of the fear, or overstimulation we experienced with Cav (He did well also which was the truest blessing.)  His little personality shined as he commented and talked with each new homeowner.  I have to believe my little fisher of men renewed people's spirits and brought them joy.  He is also the biggest class disrupter but how blessed we were that our teachers love him and encourage his presence.

I finally broke out the sewing machine after 3 years and made them all outfits

Made minion marshmellow pops for 3 classes (Cav's class only did healthy belch heehee)
These were super easy and when I had to race home was quickly able to make 5 more!

THe preschool party was an easy success and all the littles had fun!

Cav's party was earlier than last year so i got to just be a mom in his class!

Our little class disrupter

Brahm's cute teacher loving our baby! (and yes I lost my mind and let them purchase a fart gun!)

I still haven't figured out the big family thing completely.  With 3 ~ I always made the special snacks, was room mom and made outfits.  Reason would stand that with twice as many I could do half as much but truly God has blessed me in still being able to provide my momma's desires with joy and not feel overwhelmed or stressed.

Halloween is always a bit different for our house - mainly because we live in a community that has all 5 acre plots of land.  There is an official don't come to our doors rule for our community.  Luckily, every year we are Blessed by friends who recognize this and invite us over - THis year our bigs went on their own with friends - which was bittersweet to say the least.

It was fun though to be at our friends home and open the door to squeals from the children, the laughter and sense of community as the streets were filled with children and even the community firetruck came by.

Today in bible study a friend uttered such profound words.

May we always knock on God's door with the eagerness of a child and utter anticipation everything He gives to us is good.

Loving hard kids

I received several emails asking me to repost this after I pulled it because of nasty comments from the specific people I speak to at the end.  Mom's with hard kids need fellowship, they need people to stop by, drop a coffee on the front porch with a note of love and expect NOTHING in return (not even the door to open until after their car pulls away because she is so embarrassed by her looks, her house, or her raging child),  A hug at  church, a meal, a smile.  In our first year home I could NOT do happy hour any longer, go with friends to get my nails done ~ truth is I was (we were) in crisis mode.  People who didn't understand left but you know what almost two years later God has placed the most God loving friends in my life who understand if last minute I can't make it, ask how to best support my hard child but most importantly don't judge.  We are very lucky as we have come a very long way in a very short period of time.

When I first started looking into adoption
I heard that adoption would bring out all my skeletons.

Yeah, right I thought.

You see I thought I knew what it was like,
I wasn't one of those new parents.

I had parented three children.
I had cared for countless others who suffered from
abuse,
shaking,
neglect.

I thought I knew what I was getting into.

I was wrong.

Just like our other adopted children,
I held onto those few pictures for months,
running my fingers along the edges,
just as I had rubbed my pregnant belly.

Praying for a child my arms ached to hold.
Praying, loving and worrying.

I still remember those months of anticipation.

THe night before as I looked at the cribs,
The darling pair of slippers left by hotel staff.
Laughing as they had no idea of our sons legs.
All of my birth children waiting in anticipation, with special surprises,
waiting with open arms to welcome their new brother into their lives.

I remember as they brought us a malnourished child covered in barf.
THe child who immediately moved around our room
trying to destroy each item he could reach.
Never crying, never noticing things were different.

The beloved new brother fighting, hurting his new siblings,
My heart hurt as their open hearts began to close slightly.

Oh we were so unprepared.
Our excitement of spending time in CHina turned into a crisis,
A child covered in bruises,
skin and bones, and scars around his waist.

My heart hurt as I watched my son wolf down food,
My heart hurt as he screamed each time we held him.
And slowly we realized we were merely a tool.
A tool to food, warmth and toys.


And then my skeletons slowly appeared,
Boundaries never set,
Low self-esteem,
childhood abandonment etc.


Many have questioned our parenting of him.
Truthfully, I sometimes fall into the trap of questioning myself.
WOuld other people parent him better,
What am I doing wrong?


We have seen friends and family disappear,
The changes to great,

Days, weeks and even months
I held onto only God's word,
He tells me He knows the plans for my life
and the single word like a beacon
His plans to PROSPER me.
                                       Jeremiah 29:11


Almost two years later many things are better,
we have all changed, become wiser and found a new peace.


God has replaced every friendship,
family member we lost
with God loving people who support us,
not judge us.
Who love our son within his boundaries.


We completely believe God sent him to us,
and Us to him.
We found value in this little boy who touches so many,
We love him enough to care about not jsut his legs,
but about repairing his soul.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Below is an exerpt from this blogpost ~ I hope you find as much comfort in it as I.                                       

                               ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

But, you see, you DO love them: 

You love them by doing the loving thing over and over and over. 

You love them by parenting them in the way they need to be parented – with high nurture and high structure (despite how you parented your other kids or how your church friends parent). 

You love them by holding them when they are raging and telling them that you aren’t going anywhere. 

You love them by praying for them and fighting the spiritual battle on their behalf. 

You love them by not being easily offended. 

You love them by not being easily manipulated. 

You love them by not giving up, by not confirming their suspicions that you are just like all of the others who abandoned them and broke their trust. 

You love them by laying down your life, picking up your cross, and dying to yourself 

over 

and over 

and over.

Yes, you love them. . . and by the grace of God, someday, yes someday, you will wake up and realize that they believe you and they trust you and both of you FEEL, truly feel that phileo (friendship) love that you have both been longing for.

  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

  And if you are a friend of someone who has a child from hard places I BEG you to support them.  THe Bible commands us to care for the widows and orphans.  I have learned on my journey that very few will actually adopt but this command applies to us all.  As a friend (I believe) God is commanding you to help that mother/family and thus helping that orphan (adopted child).  

If they ask you not to hug their child PLEASE do not.  I understand it goes against everything we as humans know.  And the child might appear to thrive under you touch but I can guarantee you this mother will be dealing with the disregulation it causes for hours, days and sometimes weeks after.  Instead tell them how awesome, amazing and inspirational you think they are.  

If the mother warns you the child is manipulative jsut believe her.  SHe is not saying it to be mean.  She has seen her child charm strangers and turn on her family within minutes.  Manipulation was a survival tool in the orphanage - it ensured an extra coat, gentle handling and extra food.  However, this mom is trying her best to help this child to feel safe and secure without having to use those orphanage tools. 

If the child is having a time in (or out) PLEASE do not interfere.  You are sending mixed signals to the child which undermines the parents authority.  In addition, the mom does not have the luxury to confront you (or is to tired).  But again your moment of caring will spiral this child back out of control.

I am praying, that all of those friends out there will instead look at that situation and give the mom a hug knowing she is doing her best in a very difficult situation.

Field Day triumphs and woes!

THere are some days I jsut want to hide in my bedroom and cry.

Today was Field Day - I HATE field day.  My kids can't do stuff, they can't, they can't, they can't.

BUT I NEVER EVER, EVER let on to them.

I dread the day in silence, plan on attending the event to try an put out fires before they begin and be prepared to have a special treat at home for them.

WHen we only had a Brahm it was easy - I spent my entire day following his group around, anticipating and making the playing field as fair and accessible as possible LOL.

With 4 littles it's jsut NOT possible.  I get a much needed work out running from group to group but still I have learned I have to depend on my teachers to anticipate and care enough to accomodate my kids on the fly.

And you know it was great for 3 of them.  Ok Tao didn't really have field day as he goes in the morning.  BUT Brahm's class loves him, as does his young, future loving teacher.  So he joined them LOL!

Brahm ran and for the most part stayed up with his group in ALL events!!  THIS was the first year he could do that!!  We cheered, and were beyond excited for him.  Previous years (as we are jsut about a month into school),  Field day became the demarcation line where we could see his status in class go from cool little guy to something is wrong with that kid.

It has been beyond heartbreaking to watch.  BUT I think we are past that with him, and my heart sings!!  We were blessed with a gloriously warm day which helped his joints.  WOnderful kids who would match up with him at stations.  Apparently he did get drug in the 3 legged race, but at 32 lbs - well it's not hard to do.

Fei - well she was Fei with her radiant smile!  My favorite were the hurdles.  Apparently, she ran up to them, looked at them and then crawled under them!! LOVE

So our littles did incredible.  I am so relieved and excited that they had fun, had fun with their friends and are still as awesome before this day!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And then there is Cavanaugh - this may make people mad, but we only accomodate our kids some (ie I went to find the hand trike because I knew he couldn't do the bike race).  But most of the activities we ask them to try.  That's it, step up, do your best and be respectful of the people volunteering their time.  You don't have to be the best, you don't even have to finish but you must try.  (I am talking frisbee toss, ball throw etc.)

(THis is the 3rd year Cav has participated in one capacity or another so it was not new.  He has been slowly spiraling downhill as the predicted honeymoon is slowly waining.)

Cav decided he was not going to do any of it, and was defiant and nasty to his teacher and helpers.  So much so that they called me.  Luckily, I was on my way and we had a little come to Jesus meeting of how he is expected to act ~ period.  Both my husband and I are of the premises that teachers are not paid enough for the crap they endure.  I have to admit I am horrified that it is my son causing so many issues ugh

Cav loves to act more disabled than he is, and his teachers well, they have great hearts but totally enable the "poor disabled boy".  By the time I got to the school from my bible study at 11:30 he had eaten everyone's food from the wagon, gone to the bathroom twice, went to see the nurse and totally disrupted the entire classes time.  The hard thing with manipulative kids is that you can't pinpoint what is going on but you are totally and utterly exhausted and frazzled.

Giving him the benefit of the doubt I let him apologize to his teacher and rejoin his group.

THis lasted for a bit but then all hell broke lose.

Let's jsut say we left the school early with him screaming at the top of his lungs.

The sad part is that people only see Cav for his legs.  Not the child behind them.  If he had been born with legs I can guarantee he would never be allowed to act like he does.  It is such a disservice for his future.

My heart also breaks because those around us that saw me carrying my screaming leg flailing 5 year old out of the school will go back to their preconceived notion ~ that's why those orphanage kids shouldn't be adopted.  And THAT breaks my heart.

Tightrope walking through adoption

Before I forget I have to tell you all that Cav seems to be a new boy - in Colorado Kindergarten is 1/2 day but you have the option of paying for full day.  We were thrilled he received a full day placement.  

If you have followed our journey you know it has been hard, beyond hard.  One day I was watching Nick Wallenda walk across the tightrope.  He explained how he slid his special made leather shoes  - slid along, feeling his way along the tightrope toes down and heels up.  It was the slow sliding, feeling the rope for direction as he went that struck me.  It is exactly what we have been doing.  Afraid to step to big, to fast but instead that slow almost visceral slide you do when you get up in the middle of the night and know there are lego pieces on the ground.

We tried following the books, finding new resources, meeting new diagnoses head on, but truly for the last almost 2 years we have felt like we were sliding along, our faith as the balancing bar, trying to find our way.

WIthin the last few weeks we have all of a sudden felt like we are at the end of that tightrope and it is exhilarating.

Our decision to put Cav in full day kindergarten (1/2 day is free) in the spring as a last ditch effort just might be the smartest decision since we got home with him.

Our thinking was simple - my worst attribute and biggest issue between him and I (or with our family per say) is that we like to fly by the seat of our pants.

My bio's learned to nap in the car.
Friends who were restricted home from 1-3 everyday made me crazy.
I am not criticizing those who live by a schedule but I just can't seem to get it down.
On our off or summer days - breakfast is at 8 or 10, lunch 12 or even 2, we get dressed when clothes are laid out, and some days we don't get dressed at all.

For a kid who grew up in Cav's circumstances it jsut sets him off.
Let me tell you I have tried -
I have beaten myself up for reverting back to no schedule - and the last thing when you are in the trenches is one more thing to make you feel like a failure 

The other thing we realized is that he still has no idea what to do when he has down time.

We have an entire sunroom with jsut their toys.

In many ways Tao is much further along in his development than Cav.

When there is free time Cav gets into things, destroys things or hurts others.

We have tried to keep him in his own safe area but then more feelings of failure.  He missed out on so much, we want him to play with the others and truly his siblings are the best playmates he has ever had.

They do get tired of his antics, but since there are 3 of them - someone usually has forgotten his meanness and is ready to interact.

Anyhow, Hubby and I started talking about daycare from the time Cav got home.  I just couldn't do it.  Hindsight (and this is why I am writing this) I wonder if that is what we should have done.

BUT we prayed, and prayed and then begged to get him into a full day kindergarten program.

and you know what -

We are seeing a NEW boy!!

Ok the first 2 days were rough but versus Fei's loving year group, Cav's - well it fits him.  He is not the worst of the group and we feel so blessed.

Also we figured out that explaining to him that when the teacher has to talk to someone, she is actually signaling the class that the person is being a baby and not following the rules like a big kindergartener would.

To Cav NOTHING is worse than being a baby!!

I am realistic enough to figure we are in the honeymoon phase of school.  BUT I am also hearing from others with hard kids that school works for them.

Everything is scheduled and that schedule only changes mildly, from when he eats, to when they use the bathroom, and play with certain toys.

In addition, all of our special helpers are in place.  We have a resource teacher (folks, if you have a hard or SN kid this is the person you NEED to talk to!)  When and if Cav loses it they have a quiet room and he can rage all he wants without distracting the teacher, students or calling me.

We have an ESL teacher - we will see on this as he is actually considered Alingual - he heard mandarin around him but no one actually spoke to or required a response from him.

Also he has speech - I wish the district had done speech as he was learning English due to the alingual diagnosis but he didn't qualify.  So he has developed a side lisp - or he sounds like he is talking with a mouth full of slurpy LOL!

Maybe the most important part besides the schedule, is that we have time away from each other.  Instead of the feelings I have fought for the past almost 2 years, I have begun to see the image of the charming little boy who has concurred so much. (to be frank it is hard to see anything positive when you have found feces and marker on the carpet yet one more time.)

THis summer was so hard, and yet jsut like a colicky baby it all has seemed to disappear.  I haven't completely stepped off the tightrope yet, but I am feeling like we jsut might be to the end - can we truly see the end, I know not to speed up but to continue slow and steady.  Praying each step as I feel along.

Can you tell this has been as much of a growth time for me as for him.  It is hard to write these things, but I read over and over again of others in the trenches and my heart aches.  Adoption is hard, others jsut don't understand how terrible it can be, I mean hitting your knees with nothing left to give hard.

We were so in love with this pic of Cav

Some people get way "lucky" (is it luck or does God know how little we can handle at that moment - i.e. Tao's adoption)  but a lot get blindsided by the reality - they think they lack the ability to parent these kids.

They have spent months praying over a picture, working hard to get them home as soon as possible.

Everything is done as a rush, rush, rush and then you land back at home and all of a sudden you find yourself hovering over an abyss holding onto your faith and ever so slowly finding your way one delicate step at a time.

1st day of school

Ha!  people ask us all the time if we homeschool and frankly I commend those that do but my children hardly listen to me when it comes to brushing their teeth.  Also our littles REALLY need to be out in the world as much as possible we believe.  Advocacy for them will perhaps be the greatest tool we can teach them.  Brahm not so much - but Fei will be little as in her adult height will be similar to her current peers (1st graders).

We are so blessed by our school - and most importantly we are blessed by our teachers - they LOVE our kids.

So although it is a whole new year, we have all the SAME teachers except Brahm.  Everyone else moved up into last years teachers.

For littles this has been amazing, I didn't have to coach the 1st grade teacher about Fei's needs, she had Brahm last year.

The kindergarten teacher knows we don't treat our children as disabled - we expect them to do the same as their peers to the best of their ability.

It was amazingly an easy morning, especially since the 1st grade teacher took me aside and warned me the bathroom locks hadn't been changed (fei can't reach them to close the door.)

So we have a freshman, a 6th grader, then 2nd, 1st, kindy and preschool (who starts next week but didn't want to be left out!!)

Tao starts next week but we didn't want to leave him out!

Gorgeous girl ready for 1st grade!

Handsome 2nd grader!!

Cav had issues this morning about taking pics, and it was past time to leave

But I was able to snag a phone one from class!

World Dwarf Games 2013 ~ Part 2

Sorry, we unexpectedly had a sleep study for Fei and well school starts Monday!

But I won't hold out on the pictures any longer LOL!

I am thinking this will be a - I dunno 10 part series ugh

So you are more than welcome to just ignore our blog for a bit but I really want to capture some of our trip with the kdis so that I can eventually print books and I dunno, have something for our littles like the bigs scrapbooks LOL!

Ok back to the Show!!

I have to say we thought people gravitated to Fei and Tao because they were dwarfs

Yeah NOPE!!

This years games were the largest ever with 400 athletes and everytime I turned around Tao would be with another girl, a group of girls, getting his picture taken and flashing his dimples LOL!

Perhaps my favorite pic ever of him right down to the cookie crumbs!

Every time someone new fawned all over him, I was sure to remind them that not only was he adopted but he sat on the shared list for a year because no one wanted him.

He is truly a fisher of men!! (and women)

She is the darling daughter of a dear friend who also works very hard in the adoption community

Fei was given these glasses by a new friend and he thought he was hysterical

Siblings hanging out between games

The nice thing is that siblings - well they automatically have something in common with the other average height (AH we don't say normal etc) siblings.  THey hung out together between cheering on the littles in their families.  We hope they learned that the feelings of jealousy, and annoyance are common and natural.

And since I have been asked, Cav well, Cav jsut had a rough trip - 

no schedule

Abnormal food

Abnormal rooms

And a lot of attention on siblings.

AS a funny Fei told him that if he learned to run he would become a dwarf too!

Yeah I am guessing we need to work on her a little.

But truth be told he has been very stubborn about even trying to run, 

and doesn't want to listen to mom at all.  

So he walks fast like he has had a stroke on one side.  

We told him, they had games for him too, when he learns to run.

He also got stared at a ton which jsut made us laugh since ever person at the games were used to the stares, comments and the like!!

Our big kids  well they are awesome and the little littles LOVED them!!

I have to say I love this boy - at 14 he truly has a heart for God and shows it!

We had a free day and the littles got to play flag football (none can play tackle due to head and neck issues)

My next post or 2 will be on this important day

BUT I had to include that fact that Tao played ball for 20 minutes and then. . . 

was once again surrounded by the girls LOL!!

If I was good I would know this mans name but the guys were pretty excited and so I think he is the head coach of Michigan state LOL!!