A little glitch - well. . .

Ugh just as I posted last week about our little man - we got a phone call from the international adoption clinic - - at 5:30 at night (never good.)

I held the phone stunned - he had some positive test results.

The prognosis was not good.

Of course I was on my way out the door for school conferences.  I cried the 30 minutes it took to drive, wiped my tears and pulled up my big girl panties ( BTW apparently devastating news for one means you have the best conferences of your life for the other four LOL!)

Children's Hospital was able to get us in the super clinic (for very medically needy kids) within 3 days (this usually takes weeks or months) AND with the most amazing DR within TWO days.  This quote explained why the rush (notice the date).

And that's when we hit our little glitch LOL - We went for what I thought was a meet and greet ( 1 1/2 hours from our home) and we ended up being admitted.  It was really the only way to get the blood work, spinal tap, abdominal ultrasound, EEG, MRI and consults with every specialty in the hospital.

I had all of $20 and no working credit card with me (yes mother of the year BUT I did run to Target to get Remy's cups that he can drink from and a lovey - leaving me with $6 LOL).

The rush for Remy was we needed to start massive doses of antibiotics but you can NOT do that until you know what you are working with.  In our case, what he tested positive for has basically been iradicated in children since the 1940's to 1960's.  Most people had never seen a case in real life, and those that had, had seen the ravages of this disease in adults as they went mad.  In the US, mom's are all tested and newborns are treated immediately - to see this in an almost 5 year old well, not good.  It's a progressive disease (not contagious) which attacks the bones, organs and brian.

I wavered between being REALLY, REALLY mad at China (his file clearly states he was negative - everyone agrees this is impossible.) and so glad we had expedited and rushed to bring him home.  Even in the four months since we had him, we started seeing a decline, not in his amazing personality, but he was losing the few abilities he had - like putting his shoes on, or taking his sunglasses off and putting them in the basket.  I started noticing him standing there - like he knew he was supposed to be doing something but not being able to recall.  More and more we saw him standing with his hands clasped together like a grandpa - it was becoming heartbreaking.

When your child who is almost 5 functions at 14-18 months and you start losing skills you scream at the unfairness.  This child already has so much to deal with, his albinism makes him legally blind, he has no language except echoing, and now we are going to lose that too?

So although the admission was not ideal, I was glad to see we at least had some direction,  We saw every specialty from hearing, opthomology to neuro and genetics.

AND we saw that just maybe God needed us in that building at that time.  We were admitted through the ER so Remy could have a spinal tap done.  The Dr who did that - he is adopting from Bulgaria.  I was able to talk to him, to guide him as to why Remy doesn't cry when he gets blood drawn and to answer questions.

A friend texted me that they were admitting her son, he ended up having even more devastating news than we received (on a different timeline), I was able to hug her neck as she received the MRI results, alone and away from home.

And I got to teach a lot of medical people, and lots of students.  My heart is teaching - and Remy, he has several diagnoses that most people will never see in their entire career.  From his nystagmus, and even albinism, to his echolalia, and blood results.

AND that speck - yes that is a Ladybug on our window - 8 floors up - in November.  Only God!!

And on the 3rd day, after finally placing his PICC line, we were able to start his major doses of antibiotics - not some expensive designer antibiotic - nope the cure is penicillin.  A $5 drug that even an orphanage could have provided.  This treatment will hopefully stop the destruction to his body, but what has been destroyed - - well, prayer is our best option.

So four long days we spent in the hospital (which really was nothing but for the being unprepared with 7 other kids at home LOL!) Our village stepped up, feeding our kids, loving on our family, and bringing me coffee.  I have often have a very hard time accepting help - I can do this myself, in my best 2 year old voice, has been my mantra.

And the lesson God kept telling me - Let them Bless you, LET THEM HELP.  Just as YOU went to China to do my work, they are doing my work by blessing your family.

That, my friends, was my lightbulb moment.  I recently heard the best quote -
"Who are you to tell ME what a Blessing is?" -God

THankfully, I was able to convince the hospital that I still had my Nursing license and there was no reason we couldn't do the round the clock IV antibiotics at home with a PICC (central line).  We are still processing all that has come about - what this entails for our sweet angel, and our family.

I do have an overwhelming sense of peace.  I think because all of this, along with the craziness of our family was the proverbial last straw.  Although the back that was broken was my need for control - and with that God said -finally!

Yes . . .we are alive

So, I actually had a reader track me down and what she asked broke my heart - did we disrupt?

NO!!  We have our little guy home

He is sweet, happy and truly one of God's gems.

Racing to to do all of his paperwork AND raise the $30,000 needed to adopt him  - - in just over 5 1/2 months just about did me in BUT we met Remington (Remy) the very end of June.

From the time he walked through the door we knew he was severally delayed.  He looked like a baby who just learned to walk.

Oh but his soul - so sweet,
His spirit - so happy.
And of course we were in love.

Our time in China was hard - we were expecting a child that potentially was ill, but on target for an almost 5 ear old (or close.)  The truth was he couldn't navigate steps, had little ability to walk AND due to a last minute change Brahm went with me instead of Morgan.  This trip was hard.

Oh but this beautiful boy was so worth it.  And interestingly, because he looks very European in his facial features, everyone just assumed he was our birth child.  We never had any issues with the Chinese being mean to him or about him.

These two are 6 months apart in age, and a world apart in ability.  Tao has stepped into his role of big brother and has been amazing.

Remy is legally blind due to his albinism.  He sees well enough to get around which has been fabulous for our family.  Our kids are amazing - taking his hand and telling him up or down in Mandarin when he gets to steps etc.  Remy REALLY needed a family, he was so neglected and needs so much sensory input, so he is the perfect child in this crazy large family of ours.  Someone to always play with him, teach him, guide him.  

We have SOOOO far to go, but I know for a fact that this little boy needed to come home, and God has incredible plans for him.

(Don't worry I will be back soon, we are facing some pretty major changes over the next few weeks.)

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!

I HAVE THIS!

We are DTC for Superman and were LID on 4/14.

The US expedited his adoption and now we are praying that China does the same.  If that is the case we leave in the next month to 6 weeks I am guessing.  If they don't (LOA's have significantly come down in time) I am still praying for August.

I know it's his timing, and He has always timed it just right in the past!

However, this post is about so much more.  This is about HIS provisions as well as His plan.

In June, there was a kickstarter that intrigued me - self tying water balloons.  THey had an opportunity as  part of their kickstart to become a wholesaler when their product hit the market.  AS a mom of 7 kids I knew this product would sell.  I am forever harassing my husband to get kid friendly products by the register of their men's store.  I figured this would be a great product to have up there.  In addition, the amount of money to buy in basically was covered by the product so it was financially a smart choice.  Besides in June we were good to go - remember no MORE kids was our mantra.  NOT even a thought in our heads of reusing.  That door wasn't just closed, it was unseen.

So I paid my money to kickstart the project and really pretty much forgot about it.

When we committed to Superman, my hubby's said I would have to figure out how to pay for it.  He is dealing with a new business start up and a large part of his salary has gone to that.  Although we were fine as a family, there just was not the $30,000 to bring superman home.  With an expedite - we had even less time to earn, save and raise that amount of money.

(STAY WITH ME - this is NOT a plea for $$$ I promise)

So I started making things to sell - dolls, coffee cozies, asking for funds to our Reece's Rainbow account, selling the kids clothes at the JBF sale - whatever I could think of.  And each time I felt like I was running into a mild roadblock.  Not a huge shut door, because things did sell but not at the rate we would need to get superman home.  In addition, with 7 kids, making the dolls and coffee cozies meant super late nights for me or time away from the kids in a big way.  All of which I was happy to do to bring this little guy home, but I slowly started to see the house suffer, and the kids act out.

I was feeling hopeless, I was begging God to answer my plea's.

I started second guessing if Superman was ours.

At the same time our paperwork was seeming to take forever, not huge roadblocks but a bunch of minor ones that added up to weeks.

And then that box of balloon's showed up - and I posted them on Facebook and sold a few, I listed them on Etsy and something miraculous happened.  The balloon's began to sell.  I needed to order more to keep up with the demand.  Then I made the fun starbucks cups and they began to sell.  Both super easy and quick.

 (did I forget to mention that when a huge box of 75 packs of water balloons showed up my husband was sure I was certifiable.  He is the realist, I am the dreamer, the chance taker.  I never doubted this product was amazing, and moms and dads would want them.  He thought we would be gifting balloons for the next 30 years LOL!)

Between all of the orders, and the previous ones from the dolls and coffee cozies, AND our paperwork finally getting to China - I suddenly feel like we are making huge progress.

And all that time when I was begging with God -

 He was saying I HAVE THIS!  

I knew how We were going to pay for this adoption

 before I ever asked you to adopt this child.  

BELIEVE in me!

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.)

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!!