God's closed doors - Part 2

Encase you missed it part 1 is here http://bringinghomeholland.blogspot.com/2015/02/gods-closed-doors.html

In the previous post I forgot to mention that while the ladybugs came I was also resigning with God because we have paid for the previous adoptions out of pocket.  We are OUT of extra money.  We have a kiddo starting college in 2 years - so truly the thought of adopting wasn't going to be easy as it had been before.

OK, onto the tale.  For those that have not experienced it, losing a child that you have prayed for, named and envisioned in your family is very similar to the heartbreak and pain of a miscarriage - without the physical hormones.  This child you envisioned in your family is NOT going to be joining you, what you thought they would look like as adults - you may never know.

As I went to my office and threw away the little guy with the facial clefts file, there was another file that was sitting underneath.

I am not sure I have mentioned but if we were going to adopt again it would not be an easy, easy child that would quickly find a family.  Besides the fact it's like a stinking piranha field in the adoption community, our heart was to give a child a home that would sit for years.

So when I went to throw away the file of the child with the facial cleft, another file was underneath.  The cutest boy I have ever seen - but his Sn was easy - albinism.

I am not even sure WHY I had his file, I remember requesting it, but not why.

My husband walked in at about that time, took one look at the picture and said "He is a dwarf."

Me - "No, honey, he is from China - he has albinism."

Hubby - "I am pretty sure he is a dwarf." he said as he walked out the door.

SO I pulled up my dwarfism growth charts - and checked, and rechecked.  He plotted 50% on the dwarfism growth charts!!

But a child with dwarfism and albinism - it couldn't be possible.  My dear husband always says there is a billion people in China - a one in a million birth defect (we talk about Cav) there are still 1,000 people with it.

The next morning I googled albinism and achondroplasia, then eventually albinism and short stature.  As I read medical journal after medical journal, my horror for this child's condition grew.  China had no clue what was wrong with this beautiful baby.  Pieces from his messed up file began to fall into place - he had one of the rare OCA-ID or immunocompromised forms of albinism.  It was a lot to take in.

I paid for an update, I consulted world specialists and we prayed.  Could we take on a potentially terminal child?  He had almost died from hand, foot and mouth the year before - losing all ability to walk or talk.  Although he had regained many of these abilities - we had learned with previous adoptions not to trust the files.  Even with the once a day shot in the US that would help his chronic neutropenia (think someone on chemo),  he could potentially still die very young here in the US.  I believe that he will not, but we needed to have a heart to heart with the kids.  THIS time we wanted their input, that it would be ok, because frankly I knew that having a terminal child in the home could severally and adversely affect some of our children forever.  From my research and contacting a few families with similar conditions - we knew left untreated he would probably die by 6 years old if left in China.

It was Brahm who said - "Mom, at least if he dies here we will be holding his hand and praying for him."

He was right, we decided to submit LOI on veteran's day.  Once again he was with another agency (who doesn't transfer files.)  I was so afraid a family would not do their research and adopt him having no idea of his true condition and then disrupt.

And we waited - third time had to be the charm.

Our agency came back and said the agency he was with said he had a family.

I didn't think this was right (it was our agency we used with Cav and Fei - they are liars).  I did some asking around, no family.  Our agency went back to China - this time having their male in country person talk to China.  Again the other agency said he in fact had a family that was submitting LOI.

WE WERE DEVASTATED!

Although I was still praising God - I was done doing His work.  

It is a blow that frankly I was done with.  So much heartache with each NO, each time that door slammed, it reverberated in our ears, our hearts and through our entire family.  It was not fair to us, but most especially to our kids.

I WAS DONE.

And the stupid ladybugs kept on living in our bathroom - when we were looking at the twins, I told God - bring me 2 and I will know they are ours - that entire time only ONE ladybug ever appeared.  NOW we had up to 10 at a time, my husband was ready to call an exterminator - it's freaking November people!!

I hibernated, I gave up.

And so we prepared for the holidays - enjoying our family.  Determined that it would be the best Birthday and Christmas ever for Dawson - his first with a family.  We spoiled him, trying to make up for the years he spent without.  This boy of ours who was such a delight, such a treasure, we almost missed out on because of fear.

No more kids, no more - our family was done.

And then . . . . on the morning of December 22nd, bright and early our east coast agency called.  Wanna guess who showed up on their list -

I was in shock, I stammered through the phone call.  I did NOT jump for joy, but was ticked with the other agency for lying and costing us 6+ weeks.  I told her I needed to talk with our family, we had already told them that he was gone, someone else's son.  I WAS IN SHOCK - I told her I would call after Christmas - it was just to much to process.

Yeah - it took us all of 2 hours to talk, agree and call her back.  Luckily, China still had our letter to adopt him and they would ask if it could be resubmitted.

And then we heard NOTHING - ugh really God!

During this time, we were called for an emergency foster care placement.  It was really hard because we knew if we said yes, we would potentially be saying no to him, and if we said no we would not be caring for a child who was in desperate need (we are talking life or death.)  So we said yes to the potential foster care - figured out bedrooms etc.  (this was over the week after Christmas.)

More than anything I want to follow God's lead NOT get in His way.  

During this time, CHina was shut down and reworking their entire computer system.  

The foster care placement did NOT take place, and the kids started back to school. . . . and then 

We were told we had in fact received PA on Christmas morning (no one knew how to read or get into the new computer system.)

He was ours.  

I have no idea why our journey was so long, so convoluted, all I know is God had a plan right down the the stinking ladybugs who have died down.  I think the last flew on my shirt the other day and then disappeared.  There are other parts to this God orchestrated story I will be telling in the next weeks - until then we have been working to expedite his adoption.  We have 2 letters from Dr's saying he needs to come home quickly and start treatment.

It is our goal to get him home before fall so that we can boost his WBC and immunity before fall hits.  For us that means we have little time to cut back, and save for this adoption.

We have worked hard on two ways to raise funds - 

The first is a tax deductible FSP through Reece's rainbow (that was totally God's work too)

http://reecesrainbow.org/87800/sponsorkreb

and the other is we are making these great coffee cozies and China Cloth dolls - all money to pay for our adoption.

http://www.heritagekid.com

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.)