God's closed doors

Slam, slam, slam

The last several months have been a series of closed doors which we absolutely have NOT understood.

You see when we adopted Dawson we were scared to death, even a little overwhelmed by the number of kids - cuz really every time we turned around people would comment on how many kids we had.  It was odd, we don't FEEL

More than 3 times the kids most people have.

If you remember we just were surprised when Dawson's family backed out and our agency called us.

We himmed, and hawed, it seemed crazy at the time, but what a blessing that big has been.

We have had a few minimal issues which more have to do with spending 9 years in an orphanage than an issue with him.

We are just about a month away from celebrating ONE YEAR home with this boy!!

It's really hard to believe.

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

Anyhow, in July I looked at an email that made my breath catch - identical twin boys with the names of my stepdad and one of hubbies Uncle's.  They aren't average names - but rather old ones.  THey weren't matchy matchy twin names, one was a name I had never heard except for the family name.

THey were so cute, had a significant but manageable SN that is very similar to one of our kiddo's

And the thought to reuse Dawson's dossier was born.

We prayed over these boys, hubby was NO!, I felt God telling me to be patient.

July disappeared, and mid August came before we even thought about discussing things.  CCCWA approved us for two on a reuse - open door right.

THen the ladybugs began to move into our bathroom.

The problem was they were with a different agency.  We asked if we could have them transferred.

We had hope, they led us to believe they would transfer the boys - so we wrote LOI in September.

SLAM, SLAM - oh it was heartbreaking.

It's strange, the only thing I can compare it to was when we had suffered a miscarriage - minus the hormones.

We had prayed for these boys,
we had envisioned them into our home,
we were scared but wanted to be obedient to His plan,
we had named them.

A month passed, the damn ladybugs still resided in our bathroom,
the call went out for a little boy with a major facial cleft.
There was something about him, but I had sworn I would NEVER adopt a child with a cleft palate (I do not view it as an easy SN).
We were all still mourning the loss of our twins,
I was trying to figure out what in the heck God was planning.

This little guys time was almost up with his agency (end of Oct.)
I asked our agency to request his file a week prior to the date.
We waited, with baited breath
AND then
SLAM.
Don't get me wrong - I love these boys have families, but my heart hurts for us.

I can almost still hear that slam reverberate in my ears.

Really God!!  I screamed from my knees, I have ladybugs now procreating in my bathroom, it's COlorado, it's cold why send me signs, why toy with me, let us be, let us enjoy our family as it is - go call on someone ELSE!

And THEN the baby ladybug showed up.

to be continued . . .

Adopting a child with dwarfism

We get asked a lot about the medical needs of our kids - in fact a comment asked yesterday spurred this post

"What is being done medically for your kids with dwarfism."

Let's answer that question first - 
NOT MUCH.  
They are super healthy, 
They are like you and I,
They are just short.  

******************************************************************************

We often get asked what adopting a child with dwarfism entails.

FIRST and foremost - you have to know China did NOT think children with dwarfism were adoptable until recent years.  Many orphanages still find this an unadoptable special need.  PLEASE keep this in the back of your mind when reading over files.

In our experience after reviewing MANY files for kids with dwarfism, we find the healthiest kids with dwarfism listed.  There will always be the exception but for the most part they are the healthiest kids, with the straightest legs in the dwarf community.

We have adopted 3 with achondroplasia (what you typically think of when you think of dwarfism).  Since achondroplasia makes up 80% of people with dwarfism that is what I am going to talk about here.  If you are looking at a child that we suspect has another form of dwarfism, most of this will NOT apply.  However, I am happy to answer specific questions as our youngest bio son has a rare form of dwarfism that makes him proportionate just miniature.

Our kids were were 2.5 yrs, 4.5 yrs, and 11 when they came home.  
We have had them 2 yrs, 3 yrs, and 10 months.

For many parts of China, they don't seem to have a word for dwarfism and so these kids are listed with everything from their x-ray findings (Tao) to made up words meaning small or delayed.  None of our kids had spinal issues noted in their files, nor did they have treated hydrocephalus (many reports say they have hydrocephalus BUT China was referring to their larger than normal head circumference - this is a normal variant for dwarfism).  I have seen a couple of files where the child had a shunt placed as a baby or toddler and you would also need to make sure you are comfortable with that special need.

MANY files will describe developmental delay, low IQ etc.  Children with achondroplasia have their own developmental checklist and it is perfectly normal for a 2 year old NOT to be walking yet.  Think a larger head, normal size torso and hypotonia (low tone) balanced on 2 short legs.   From my experience once they start walking the rest is a piece of cake.

We see many children listed for international adoption as below our normal height and weight charts.  However, a child with dwarfism is far below any chart lines period.  In fact, they have their own growth charts.  To give you an example of size, Tao our almost 5 year old wears 9-12 month pants and 2T tops.  He is the strongest, most well balanced child I have ever met - he just is tiny.  Brahm (our bio) weighs 34lbs at 8 years old.

Please know that many children with dwarfism are not allowed into schools in China, or the directors don't find value enough in them to send them to school.  This has nothing to do with their IQ.  As far as IQ, our children with dwarfism are average to very high IQ.  There understanding of social situations far exceeds any of our other children and most of their peers.  

Bringing Home 

Once you land in the US with your child you will already have an idea of your child's size and what they can and can't reach. 

Children with achondroplasia tend to have very wide feet - so we bring crocs to China to get them and go shoe shopping once we are home.  Don't expect them to come with proper shoes.  Dawson wears a size 13 wide and came to us with size 4 boots to accommodate the width.  Unfortunately he is very duck footed from learning to walk with improper fitting shoes.

I would say the same for clothes.  We bring a variety of sizes and safety pins to China.  Children with achondroplasia tend to have smaller waists but larger bottoms, short arms and legs but normal size torso's.  In the winter we have found pants with elastic or ribbing around the ankles really helps.  Girls are easy as their dress/swingtop and bike shorts work best.  However, there seems to be a huge difference on brands that fit their little bodies well.  Although not ideal, it does work so much better to shop for clothes once they are home.

Medical

You will hopefully have an appointment with a pediatrician who probably has never seen a child with dwarfism, and is happy to at least consult with one of the specialists.  Exams you will want:

Hearing,

Sleep study if child snores,

orthopedist if you aren't seeing one of the specialists above.

anxillary medical to address issues in the child's file.

Possible complications -

I will try to list ANY of the possible things that you might face with a child with dwarfism.  Most are extremely rare and we have only seen 1 or 2 children who have come home needing any of these procedures.

Foramen Magnum surgery - (I posted extensively as our daughter had this performed.)

8 plate leg straightening surgery (I don't know any adopted children who have needed this)

Orthodontia - 

Loss of hearing - due to untreated ear infections 

Sleep Apnea - may require tonsils removed or machine during sleep

Kyphosis - bracing or surgery for curvature of back

Adaptations

We started all our kids with dwarfism at a charter school this year (they have mandarin immersion). It has been so nice because they allowed us to provide steps tools and alter the desks for our kids.

Our minivan had to have a running board put on it to help Fei get in the car easier.

All the dining chairs and barstools are intentionally bought with bars so they can climb up into the chair.

We have stools of varying height for our kids throughout the house.  BUT we also walk them through thinking how to tackle their environment.  For example - Fei is now 7, and we were at the orthodontist's satellite office yesterday to reapply her palate expander.  They told her to  go rinse out her mouth.  I could have picked her up but instead walked her through thinking where to spit the cup of water when she was done - trash can, clean sink, larger cup etc.

Our kids do have someone help them get items from the salad bar during lunch - however, we do encourage their independence as much as possible including carrying their tray etc.

Trip Trapp chairs are a good chair for the end of the lunch table - our kids in particular think it makes them stand out even more and have refused this accommodation.

Social

The social situation is the #1 thing we deal with day to day.  We call it the puppy factor.  People notice our kids, they are fascinated with them.  It brings a LOT of attention to our family.  For the most part people are kind, just curious. In the early elementary years it seems we focus a lot on educating the other kids etc.  With the kids new school, I did a presentation to the entire school about same and difference, and answered questions about dwarfism.  We brought in their medals, and pictures of them skiing etc.

In preschool, we educate a lot because they equate little with baby.  Nothing like picking up your sweet little guy from Sunday school and he is bawling because someone called him a baby.

However, as our kids get older we are seeing a very interesting phenomena.  They are super popular.  Not ... we feel sorry for you so we will hang around you, but your pretty cool.  We see friends reaching for items for one of our littles without a second thought - and really that's pretty awesome.

When we leave our community, we do get comments.  For the most part we educate and the older kids are starting to take the lead.  

We work very hard on 'acting your age so people will treat you like you act not how you look.' We don't dress Tao in mommy loves me shirts even though he wears 12-18m clothes.  I do get on middle school kids who talk to Dawson like a baby when he is almost their age.  This is by far where I spend my most time on their special need.  **Most importantly we teach the other kids NOT to ever pick up our kids with dwarfism.  There are kids who have been dropped and suffered spinal injuries.

The best advice I have ever heard from a little person is "You WILL make a lasting first impression, it's up to you if it's good or bad."

Resources

The Little People of America (LPA) is the national organization which offers grants to children with dwarfism, information, education, and get togethers.  Their is a national conference the beginning of July every year.  Not only do little people from all over the US get together, but DAAA has sporting competitions during the same time.  This is such a wonderful time for our kids to be with like peers.  In addition,there are state and regional meetings throughout the year.

Best part - LPA adoption offers grants for children with dwarfism regardless of which agency is used.

Specific real life information

Dawson

Dawson is our newest home and our oldest adopted.  We brought him home in April 2014 and knew we had an appt with the dwarf specialist the end of June.  Aside from a quick look over for general health by the pediatrician we put everything on hold so he could try out the mandarin school here, and finish out the year.

We got Dawson's hearing checked,

He saw an ENT, 

had a sleep study and ultimately had his tonsils and adenoids removed.

Although he is very duck footed the correction for this would be incredibly intensive for minimal results and we have been advised not to do anything (he has a rare trifecta of hips, ankles and knees causing the duckfootedness, but with proper fitting shoes he is getting better.)

We are contemplating speech as neither his mandarin nor his English are completely clear and we want him to have the best advantages as he gets older.  (We thought for sure he had hearing problems, and some people with achondroplasia have a larger tongue which can affect speech, after having everything checked it was determined more due to spending 9 years in an orphanage.)

From here on out, 

Yearly with specialist who will monitor his legs for bowing

Otherwise he is super healthy and aside from being pretty small even for a child with dwarfism, we don't anticipate any needs in the near future.

*He was older when abandoned and we are considering changing his age but wanted him to be home a year first.

Due to 9 years in an orphanage we have been working on core strength and endurance!

Feifei

This little one has been one of 3 home from China (that I know of) who have required the foramen magnum decompression surgery.  

She had absolutely NO neurological symptoms and the only reason we found that her spinal cord was compressed was from the sleep study (she has obstructive AND central sleep apnea.)  After which we had an MRI of her neck area which showed the compression at the base of her skull.  She has also had a follow-up MRI to make sure the compression was alleviated after surgery.

Interestingly, her lungs are tiny - the dwarf specialist guessed correctly that the obstructive sleep apnea was a false positive due to the compression and lower lung capacity.  He was correct and her follow up sleep study showed minimal obstructive apnea (basically meaning we did not have to put her through surgery again for her tonsils.)

Although she is super healthy, we are constantly vigilant with her activities and with our boys to make sure she does not damage her spine.  She can not do tumbling activities, contact sports etc.  We have found dance to be a great compromise for her, and as the only little girl it makes her special!

Besides yearly visits with a dwarf specialist we continue to monitor her legs to make sure they remain straight.  (the 8 plate straightening surgery is common for teens with dwarfism but our kids have shockingly straight legs.)

Fei also has a significant underbite and flat mid face.  We were advised by the dwarf specialist to start treatment now instead of the typical late elementary age.  She has a palate expander and reverse pull headgear in hopes of preventing major jaw surgery in later years.

Kids with achondroplasia OFTEN require orthodontia (Dawson has a cross bite but his mouth looks pretty good.  We take our kids in to our orthodontist every 6 months.  He is willing to check them out free AND listen to the experts in dwarfism.)

Tao

So Tao was listed as having a heart issue - so we went to cardiology - they gave us a 3 year clear!

He also had his extra thumbs - so we went to a hand specialist and he had those removed about 6 mos home (they were not functional).  At that time we determined his thumb on the left has minimal muscle, but decided that we would not do the tendon transfer like we did with Cav.  (this is presumably a Chinese thing not dwarfism as he is the only know person with achondroplasia and extra thumbs.)

Because of Tao's extra thumbs, heart and short stature we did see a geneticist immediately.  THere is another type of dwarfism that 50% die their first year and everyone thought he had it.  They did run a genetic test and he tested positive for the FGFR3 gene (achondroplasia).  Even now at 4, I am glad we had that test as he has long legs and is quite proportionate for someone with achon.

We have a pediatrician at home for normal childhood illnesses, and we see one of the specialists above once a year.  The specialist is always a phone call or email away and is happy to consult with our Dr here if a question arises.

For our family, dwarfism has been an incredibly easy special need.  Truly the most time consuming and difficult part is dealing with other people's ignorance.  This is not particular to  dwarfism though, this seems to be an issue for all visible special needs, and I dare say anyone who looks different in particular.

We try to keep track of children with dwarfism available for adoption - here

Being brave in the brokenness

The number one comment both good and bad was HOW we could have adopted again after bringing Cav home and having so many issues.

Whether you agree or not is fine -
You have to do what is right for your family,
and we did what was right for our family.

Was it crazy - YEP!
Would I suggest it - probably not.

BUT we are very strong in our faith, and we knew for a fact that God called us to adopt Tao.
It scared me to death.
I begged God the entire process,
"Dear Lord I can NOT do another adoption like we just did."

And you know what . . . God knew exactly what I needed at that time.

See, I have learned that adding Tao was not another mouth to feed,
or another poor orphan to deal with,
or that we adopted him with an agenda.

We did not - in fact we knew it was crazy,
Tao's file was a disaster,
For those that have forgotten this beautiful baby we committed to adopting was listed at 6 months old,
we found him at the mid bottom of the shared list,
A YEAR LATER.
He was unwanted, his 5+ diagnoses scary at best.
We had no other agenda for him, except to get him the medical care we thought he needed.

And 2 years later I have learned several things,
God wasn't wrong -
Our family needed Tao, to bring the sunshine into our rainy days.
Even on our worst days, it's his fat little hands patting me and giving me a hug that I remember.

He proved to us how right adoption can be.
He became a barometer for Cav,
an emulator of sorts.

Tao's sweet spirit healed all of us.
I can honestly say without Tao,
we would never have been brave enough to pursue Dawson.

So yes, to the rest of the world adopting Tao was crazy,
many tell us we should never have adopted again until we got Cav settled and figured out
(If I lived by that belief I would have had ONE child BTW.)
Someone always has an issue, a friend issue, a school issue, a crappy start in life issue, a medical issue.

The truth is the world will NEVER be perfect to adopt.
Our messy lives will NEVER be perfect enough.
We won't EVER have enough money,
enough room,
enough,
enough,

But that simple act of saying YES,
somehow fills all those enoughs,
or disposes of them.

I often think of Moses, did you know he wasn't eloquent or quick of speech.  He must have thought God was crazy not to pick someone better to do his work.  But you know Moses did amazing things, and God provided for him to do His work.

(Cav is still doing great on his meds, the MTHFR results were shocking to say the least but we have started him on a medication that is already processed Folic Acid - we will see if this makes any other difference.)

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!!

 

Getting our girl back

OK before we begin lets get a few things clear - I am tired of the judgement, the negative comments and the expectation from a few people that adoption is only unicorns and rainbows, because it's NOT.  Adoption is messy business, and if people had written about the difficulties we would have been more prepared when we went to get Cav.  In addition, I don't particularly care what YOU think about how many kids we have - let me ONLY say we can afford our children.   God did NOT call us to adopt because we were perfect, oh no we are the most broken of his people.  However, we answered His call believing He would give us the resources to walk this journey.  I am taking back control of MY blog - If you leave an inappropriate and judgmental comment you will deleted.

I really stopped blogging last year when we had to take this little girl out of school for very poor choices.  We home schooled her, and she became my shadow.  

(I also learned I suck at homeschooling LOL)

With everything we have gone through with Cav, I was shocked we were seeing the same things from her.  The worst part was she had the most loving foster family - to a fault, they didn't prepare her for adoption, and in fact when the SWI called her back they both (Fei and foster mom) both threw such a fit, they returned her until we arrived in China.

When Fei was 5 months home and had enough language she looked at us and said "China momma no come get me?"  For 5 months she looked out the window everyday waiting for the woman she loved, to come get her.  As she got more language, we learned that the foster mom had told her to get in the car and don't cry, that she would come get her shortly.  Oh my heart hurts to hear these events.

And then we made THE biggest mistake of our lives.  See she is our best sleeper and our most mild tempered child - so we put her in the room with Cav.

AND she began acting out worse and worse, and we were at a loss.

And a vicious cycle began until that day last February, when I pulled her from school.

And then I read a FB post that said to NEVER have a RAD kid share a room EVER!

So we changed rooms, and made her the cutest little room out of our library loft.

And summer came and we had some pretty desperate times.  A trip where I should have, could have, would have but didn't.  I began second guessing myself as a parent - 2 kids with major issues - how could I survive this God.  That trip brought me to my knees.  

But we saw glimpses of hope.  

So we made the decision to send her to a much smaller school, where the kids looked more like her and the days were centered around her native language (she didn't remember anymore.)  And we made a pact, if she worked hard, and relearned Mandarin then at 18 we would pay for her to return to China.  (we had always tried to explain that her dwarfism prevented that as an option.)

Almost a year later, I dare say we have our girl back.  

It has been a journey, we have both grown from it.  

We have given her a voice, and a confidence to walk away from those hurting her.  

We have gained her trust that we won't leave her and she can tell us when someone is hurting her.

Although this year has been hard with Cav we learned we were not crazy when we suspected he was victimizing her - telling her over and over how no one loved her.  Talking her into stealing for him, until she lost herself.  

Oh my heart hurts to even write this.  

And I know what you are thinking, but even the teacher at school, who is aware, missed him doing this at school ~ twice.  He is very quiet, almost under his breath, and almost like a hum type mantra.  We missed hearing it with the highest tech monitor in their room.  All we saw were the results.

I SHARE this because others need to know this - I refuse to allow this girls experience go for naught. 

And yes she is an orthodontists dream LOL!!

Room Sharing - 3 boys

I have to say the number one hardest thing we have encountered adopting 4 kids in the last few years was trying to figure out bedrooms, clothing storage and sleeping arrangements.

When we were preparing to bring Cav and Fei home - we made her room up in the darling mermaid sea life - and Cav was in the room with Brahm

For that year Cav rotated between the room with Brahm and our bedroom (Cav roamed the halls at night and would either wake everyone up or steal us blind.)

When we were in process for Tao, we put a tiny toddler bed in with Fei and it again was so cute!!

Because of the continued problems with Cav and no one sleeping we tried Fei in with Brahm (he had a bunkbed and a trundle), and Cav by himself in his own room and Tao in our bedroom.

Then the biggest mistake of our lives we put Cav and Fei in a room together (she snores rather loudly and was keeping Brahm and Tao up ugh .  .  .  .  Cav basically spent the entire time brainwashing her to steal for him, and that no one in the family loved her.  I am sad to say it took us about 6 mos to catch on and another almost 18 mos to get her back.  (I hesitate mentioning this but unfortunately his teacher has witnessed him doing the same to some of the children at school who are more needy in spirit.)

SO…..

We emptied my hubby's loft study (upstairs) put up curtains and made it into a darling room just for her.  It has made a huge difference and I believe we finally have our girl back.

The little boys room had the pottery barn bunks we had found on craigslist.

When Dawson came home we just put him on the unused top bunk.  Although he is small, he weighs a ton, and every time he would turn it would wake Brahm up and eventually Tao - grrr seriously people.

Since Dawson is older and well, used to kids from orphanages we tried him in Cav's room.

Yeah - today we found that Cav stole all of Dawson's Christmas presents and either ate or broke them.

So as I was talking to my hubby about what to do, it dawned on me the bunks were originally made to be separated!!

I had my big kids help me and with a few rearrangements this is what we came up with.  I LOVE it!  and I think - HOPE, PRAY this will be the final arrangement for a bit LOL!

Luckily, our rooms in the house are large, unfortunately the closets are small and the number of bedrooms are few - BUT I have resigned myself that Cav MUST have a room to himself for the mental safety of our other kids.   Luckily, we finally have an appt with someone to help us with him in just about 2 weeks.

Light during the holidays

I think our bio kids are tired - it has been 3 Christmas interrupted with adoption stuff.

They remember the Christmas's we used to have, hoards of presents - every new item imaginable.  Not because we were wealthy but because we spent all year saving up and shopping sales.  We always also adopted a family we gave to - it was our excuse to feel better about our blessings.

Then we traveled over 2 holidays and last year was just a disaster.

So I sat here trying to make it up to them, buying, buying, volunteering, spending.

And then it hit me the other night as we drove through town, sipping our starbucks treat and looking at the lights.  It's the little things, the wonder, the experience, the proof there is still hope in this world.

So we cherished each gasp from our 4 year old as the lights flashed and twinkled.  We paired that with explanations of how it worked for our newly home 12 year old.  Children all through the car shouting look, look here.

Seven children and 16 years of parenting have softened me to a degree.

This old controlling mom would never have caved and not only made gingerbread play dough from scratch BUT ran all over town so they had play dough rollers and tools so they could finally play with it at home!  Our double 12 year olds playing along side the baby - playing and creating, running to show me their newest project.

It's our 16 year old helping at the preschool party - making his own gingerbread cookie.  The gifts may be different but I have to believe that these are the things that he will carry with him as he enters the world.

Going anywhere during the holidays can be crazy but the world seems to slow just a tiny bit as we walk past, people stop to smile at our deeply dimpled joy, our tiny princess and the rest of the clan.  We pray that as they see our children they remember that God uses the broken to do his work.  That He reaches into the farthest corners of the world and brings hope.