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

Home -

I am so sorry we got home last friday - and a week later this is the first day I can even think lol

We designed and had these shorts made last summer to eventually announce our adoption.  In addition for an older boy joining 6 other kids we thought they were the perfect way to have him join our family.

So we flew from Guangzhou to Beijing to Houston to Colorado Springs.  So in Houston I had the boys change into their purple shirts.

It was amazing to round the corner at the airport and see a sea of purple shirts, barely held back by the "DO NOT CROSS THIS LINE" sign.  So excited to meet their new brother!

Morgan made him a hat

I loved that after the hugs and introducing - they turned around and started showing the numbers on their shirts.  I think this was especially important since Dawson is smaller than Cav who is 5.

It was so fun as we were meeting each other, we heard squeaky shoes.  Heehee our friend came to meet Dawson and brought balloons YEAH!! 

He did great on the flight, Air China was great AND Houston has the best immigration area of all the airports we have flown through!!

Pre-op

Ugh I am beat, we had another day in Denver.

But Cav got to show Mr Terry how phenomenal he is doing - again this is so amazing to have a double amputee who still has NOT gone to physical therapy (due to insurance and the fact there is 1 person here that knows what to do with him LOL!)  We see the PT for the first time for an eval on Friday - she is expecting a little boy creeping along with a walker heehee!

On to FeiFei's preop - got stuck in Denver traffic, I was frazzled to say the least, and we were late.

Once we finally made the appt here was what I learned ~

She can have an early breakfast at 7 am YEAH!!
She can have a fun clear drink until we get to the hospital YEAH!
We don't have to be there until 1 pm YEAH!
They think she is as darling as we do YEAH!

Surgery will last 4 hours
They won't have to open up the Dura which will help prevent headaches, nausea etc after
They have a great drug regiment to keep her comfy.

I was surprised she will go directly to the PICU (so glad I am staying the first night)
She will have to stay a mandatory 2 nights but up to 7 (ugh I gotta figure out the other kids schedule)
There are an awful lot of people praying for her!

And a funny - I heard Cav and Fei discussing surgery int eh back of the car.  Cav told her - you go to sleep, get a little owie, but you wake up feeling better.

Of course her only experience with surgery is Cav's so although we have discussed extensively that Fei's legs are good, they work and her surgery is her neck BUT we will be painting her toenails during preop jsut to reassure her.

Thank you for praying, for our sweet girl, for our family.  

Fei's Surgery

AS I sit and wondering about the timing of the events of the previous week, I stand assured that He does have a plan, jsut as assured as I do NOT understand why.

The HIGH of HIGHS watching this little man of ours take his first steps, has been also overshadowed by FeiFei's impending surgery.

This past week, month, summer have been a lot.

I am starting to feel drained, and I can't even get to the cleaning out nesting phase to get ready for little Griffen.  I have put on weight, I can barely finish a phone call (which I can barely answer), the house is a wreck ugh.

Ok enough about my pity party.

So - FeiFei's surgery.
It scares me. . . I know we jsut went through amputation surgery which I was fine with,
but this scares me.

Her surgery consists of removing the extra bone at the base of the skull that is currently compressing her spinal cord.  This bone is removed on either side.  Then from what I understand the first 2 days are critical in preventing swelling.

This is where her brainstem is, so the room for error is minuscule.

Her surgery is this Weds at 3pm MST.

Please will you pray for our sweet little angel.

Covenant

The past week are so has just been plain old bad medically.

We adopted Cav and Fei knowing they had medical needs.

I truly think we are in some form of spiritual warfare and I wonder if it's because we are close to getting LOA for the baby.

Poor Cav's surgical site is NASTY - as in blech, it's green and oozing, it smells terribly, and then last night we changed the dressing and there was this huge yellow gelatinous thing.  Of course my sweet husband looks to me for advice.  HELLO!  I was a NICU nurse - we didn't do this!  ICK!

But truthfully, we thank God every time we change the dressing that he can't feel the end of his leg yet.

Then Thursday I got a frantic call from our pediatrician.  She had FeiFei's MRI results and she was freaked.

Luckily, I was smart enough to ask for a copy of the report which I got Friday morning.  Also the one very nice thing about having a child with dwarfism is that the parent information group is AMAZING! I didn't even have to post as I found the information I needed under old postings as well as the file section.

The reason for or Pediatrician's freak out - Fei has a narrow Formen Magnum - um all people with Achondroplasia do - HELLO McFly!  Oh sorry did I say that in my outside voice!

There are still little bits of information that are concerning and may still require surgery but really - I had my bags packed Thursday night trying to figure out how I would do Cav's surgery next Monday and fly Fei for her surgery LOL!

Another really nice thing about the dwarfism community is that it truly is small.  i emailed a mom who we met at the Ronald McDonald house at AI Dupont years ago (both our kids are on their brochure!) Her daughter just had spinal surgery and she was a great source of information.  I emailed a copy of the MRI results to the ortho that did her surgery and we will see what he thinks.

Did I mention I am a bit of a freak.  I do choose to travel for our kids care.  I have worked in the hospital and not all Dr's and not all staff are created equal.  We do have the luxury to make this choice.  It may mean scrimping here and scrapping there but I flew Brahm to DuPont why would I let anyone else do an intensely critical surgery that I don't trust with all my heart.

NEXT please . . .

Oh yeah reviewing our latest insurance bill (they have truly been fabulous) I noticed a bill for Cav's prosthetist.  Hmmm, that kid meet his deductible in about FEBRUARY!  THen I realized the problem. His prosthetist is NOT in our network.  Are you kidding me?!?!  Um, ticked does not begin to express how I feel.  Did it occur to them to tell me when they checked our eligibility for Cav's prothesis.  So another email to our surgeon's nurse.  Luckily it was for $100 shrinkers and not a $5000 leg.

So why do I share this.  Because so many blog are about the rainbow and lollipops of adoption.  The glory days.  I thought that the spiritual warfare ended when we signed on the dotted line.  I do think some of this is really has do to with our current adoption.  But my children that were so incredibly based upon God are still his favorite targets.

In addition, if you have been reading recently we have been struggling with Feifei and her China Momma.  I now have my answer as to WHY he chose her to leave everything she knew, in probably one of the best situations an orphan could find themselves in.  In China, they would never have known about her spinal stenosis (tightening) this could have potentially been life threatening.

And then I remember what He has promised us ~

I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth.
                                                                                                                                Genesis 9:13

Our backyard

2 rainbows, 2 treasures

Moving Mountains

 I am beyond shocked - the prayers are being heard and He is so incredible.  I can see the mountains being moved right in front of us.  And on days like yesterday (waahaa) it so helps me to see His hand in the midst of this adoption.

To catch you up - our homestudy agency is NOT renewing their Hague when it expires in June.  We have to be DTC by June.  The I-800A process was our biggest hurdle in meeting this timeline.  Last year when we did this process it took 65 days for I-800A approval.

Our paperwork was supposedly sent April 16th - we finally got notice that it was received April 23rd and notice given April 25th.

Friday I opened the mail and what did I see?

Our fingerprint appointments!!

This means we can try and walk in this week.  Unfortunately we can't go in until Friday but still I could jsut cry when I see Him move mountains for one little guy!

At the latest our fingerprint appointment is for May 22, so even then we should be able to be DTC within our timeline.

A must see show!

If you have contemplated adopting a little person but wonder what it is like - there will be a phenomenal family featured tonight on 20/20

Amber and her husband are both little people and have 2 bio children, and 3 adopted little people.
I hope when you watch you will see that besides being little spitfires, they just are like you and I.

Here is a preview on GMA this morning http://abcnews.go.com/GMA/video/real-life-dwarfs-extreme-parenting-challenge-16277086

Tonight (Friday) on 20/20 with Barbara Walters will air the entire interview.

Available children can be seen http://lpaadoption.blogspot.com

Come on folks, everyone needs a princess!

Cuz, "little's are superior race!" 

(yeah mom did a good job with my self-esteem!)

cuz, sometimes, the unknowns are scary

 but everyone deserves someone to call their own. 

Here we grow again!

I have to come clean folks - we have been keeping a VERY BIG secret. 


I hate secrets, and not good at it.  
I realized today I was keeping this secret because I was afraid.  
Afraid of what others would say
think,
did I mention say?!?


Believe me when I say that it has become crucial that I ask all of those around us to pray for us. 


Let me start with the story.




We have been in a bit of shock.  Since January we have been riding a rollercoaster.  We thought that someday we might return to China . . . but not within a year.  AND most definately NOT for a baby!  This has been as close as we will ever come to experiencing an "OOPS" pregnancy.  Now that the shock has worn off, we are in the race of our lives.

We feel that THIS story needs to be shared.

This time around we received signs left and right.  The bombardment was impossible for even the most dense of us to miss!  Things like the most affordable new truck we found came with a 6th seat instead of the standard 2 bucket seats, . . . to the babies name being Tao - meaning "the way" (in a very similar way as Brahm's.)

BUT most importantly, this is a story of faith, of taking the most unexpected leap.  You see the "baby" was #953 on the shared list, and had been hidden for over a year.  Listed at a mere 6 months of age his "diagnosis" was scary.  His symptoms were listed including a heart condition, bone condition and extra thumbs.  One agency even refused to get an update because they determined that he was to severe for our family.

I sent his file to several of the dwarfism specialists and the answers frankly scared me.  Either he had the form of dwarfism like our FeiFei OR a type that 50% die within the first year.

Why us, why him, why now.

But he kept weighing on our hearts so we asked another agency for an update.  Week after week NOTHING!  We knew he was in an orphanage that almost NEVER gives updates, but we prayed.  We so felt that an update would give us direction, and help answer our ton of questions.  Finally, six weeks later and with the clock ticking, we made the decision to take the biggest leap of faith of our lives.  I am not talking about a gracefully little step forward, I am talking about an eyes closed, deep breath Indiana Jones leap of faith ONLY possible with God.

Not even knowing if this baby below was still alive, would ever walk, and hidden somewhere in another horrible orphanage.   He was our son, and if he was going to die, he would do so with someone knowing his name and praying for him.

Meet Long ZiTao - May 13, 2010 (his birthday 1 day after Cav's)

But what I love most is that God is in the details.

We asked for an update the end of Feb.  We signed our homestudy on March 24th.  We took our leap committing to our son on April 3rd.

And then He showered us with HIS grace.

We received an update on April 10th - the incredible part - it was dated March 31st!

We learned that he is obviously alive AND healthy, he is in foster care, and that he most likely has the type of dwarfism as our FeiFei.

And then we noticed his clothes.  Of course the kids noticed his French Fry pants & that he is walking!   We also received PA on 4/17/12 ~ which means he is pretty much our newest little darling!  So many prayers answered.

Now onto the race of our lives part.

Our homestudy agency will not be renewing their license in June.  We MUST have all of our paperwork to China before this time.  We have a bunch of steps - most importantly, our paperwork is being sent to Homeland security this week for our new I-800A approval.  (it should have been sent over a week and a half ago.)

Last year this process took 60 days.

We are oddly at peace but are asking for prayer.

We were not going to tell people, because frankly we are not in a place to handle criticism.  Believe me, we have spent months coming up with every excuse why this does not make sense, how it can negatively affect our family, how old we are - and eventually realized none of that matters.

Please if you have read this far, could you add our family to your daily prayers.  Pray that every person who touches his file does so with a sense of urgency and accuracy.  Pray that our paperwork is completed in a timely manner and that we can meet our June 1st deadline.  That baby Tao is covered in prayer until we bring him home.

Bring Happy home!

THere are so many unknowns in adopting, and I know that so many people are afraid of bringing home an older child.

As you can see from my friend Tammy's blog (who is a very experienced adopting family) and their adventure to their fabulous new daughter Zoe .

I told her all along that children with dwarfism also have a Happy gene - they just are so wonderful!

I was able to get an update on this fabulous little guy.  There are a few things to know.  One YES he has a shunt, this is a NORMAL thing that some children with dwarfism need as babies.  Once they get a shunt then they are good to go.  

Also where he is from - they only list SMART kids.  And this little guy is smart!

He is also athletic.  He can do a standing long jump, jump on alternating feet, kicks a ball AND can catch a ball!

He has a good understanding of expressions, speak in long sentences and asks why.

He can dress and undress himself.  He goes to kindergarten and loves his teacher.

He is outgoing, active, confident and not afraid to compete with others.

Besides being short this little guy is fabulous and healthy!

Look at how much he has grown!!

Email me if you would like the update report and any other information.

ctmy at comcast dot net

Ordinary people

If you haven't known us our whole journey let me catch you up.  Somewhere around the time our little man was 2 or 3 we became aware of the fact that little people are considered a bad omen in many countries, they have NO future in most countries.  Simply this was a seed that would eventually lead to FeiFei.  Yes, it took us 2 years but we finally began the adoption process.  We chose to adopt her because we had room for one more, we couldn't imagine our little man lost in a country with no hope simply because he is smaller than normal.

Cav - he was jsut plain old God.  God placed him in our path and even now I look at him and wonder what amazing things he will accomplish one day.

Yes, the journey is hard.  They argue, they still are trying to figure out the alpha of the group, Cav doesn't understand boundaries, um . . . really Cav is three LOL!

BUT, what I didn't expect was the reactions of strangers.

People I AM NOT A FREAKING SAINT!

I am an ordinary person, we are an ordinary family.  We had an extra room in our house, our hearts.

THe only thing we did different is that we said

 YES!

Would it have been easier to ignore the call

MAYBE

But even now I can NOT imagine our family

SMALLER.

I have been inundated with the fact that the disciples were also NORMAL ordinary people.

Maybe it is jsut the time of year,

Maybe it is just me,

But HE has made something very clear, in scripture

and in life ~

He uses ordinary people for His work.

My house is usually a disaster,

I am the worst cook, and I usually forget lunch until I'm reminded.

I run out of bread and milk ALL THE TIME!

We are late for school EVERYDAY!

There are days I just want to HIDE

So PLEASE stop calling me a SAINT, because really we are an ordinary family, with ordinary issues we jsut happen to have been blessed with a few more children, who's personal disabilities can be seen by the world but also who fill our lives with so much love, laughter and hope because of Him.

Sunday Snapshot - Laundry

 This baby is so sweet and so happy, we kind of just play life by ear with her. She is sure that naps are for babies - like Cavanaugh.  Everyday, I make her play quietly and everyday I find her asleep on the floor.

But today I just had to laugh

Cuz, she looks like I feel with all the laundry!

Simple special need!

So I think we have had our last test for little FeiFei - truly I can NOT believe that for a child with dwarfism she is completely PERFECT!

I mean really, figuring out which clothes to take for her to China consumed more time than addressing her special need.

Yes she is short, yes she will be always short.

But like my husband always says - her feet reach the ground right!, then she is tall enough heehee!

Since we have very limited history on her and she snores like a grandma, we asked to have a sleep study done jsut to make sure we weren't missing anything.

Daddy and princess met FeiFei and I at the hospital last night jsut to get her settled and so she wouldn't be scared.  BECAUSE, the last time she packed up her favorite items ~ her entire life turned upside down (even if it were for the better she doesn't know this.)

FeiFei on her fun little Trunki suitcase going for a ride!

Playing around waiting for the tech - full of giggles

Sure hope she falls asleep soon!

Tech wasn't the most compassionate with trying to help us explain what was going on

(I think she thought the whole family was there to spend the night LOL)

We finally decided on tell her they were special stickers, and no owies!

All hooked up and um. . . ready for bed?!?!

Night, Night sweet princess we will see you bright and early in the morning

Thanks daddy for staying yet again!

Best of all - she JUST SNORES LOL!!

Next Dr appt - 1 year!!

TWO Years

Two years - 

Two Years - 

Two Years -

There are currently THREE yes ~ 3 children on the adoption list that either JUSt celebrated their 2nd birthday this month are younger.

In adoption terms the term AYAP means as young as possible.  In most adoptions, 0-3 years is the golden age - but for some reason these children have jsut sat on the list.  REally, really - why because they are SHORT and they will always be short.

ALL OF THESE CHILDREN ARE CURRENTLY AVAILABLE FOR ADOPTION

Meet Josiah - his 2nd birthday was TODAY.
He lives in an incredible foster home which we have actually visited and he is DARLING!  He is currently on the shared list and the best part is that New Day blogs about their children often.  AND since he is SOOO stinkin' cute he gets his picture taken ALOT! See Here

This is Whitney and her birthday is 9/11/2008 (I believe she was jsut returned to the shared list).  She is a little princess! She knows the facial expressions of others, and can be very cooperative when putting on clothes. Whitney is extroverted, active and restless; she likes outdoor activities and playing games, watching TV and playing dolls.

Doesn't she jsut remind you of our FeiFei!

This is Ella and she just celebrated her second birthday at the beginning of February!  She is  extroverted, active and restless; she likes outdoor activity and playing games, watching TV and playing dolls. She is a likable child.  

LOOK at that hair - us moms of children with dwarfism have to admit that they have GREAT hair!!

(I believe she is with BAAS right now)

And presenting Tanner born 5/13/10 - yes NOT EVEN TWO!  (reports when he was 4 mos) This little guy was hiding on the shared list so SNATCH him up - oh isn't he cute right down to his elfin ears!  The child has extroverted, active personality, likes to listen to music, likes others to hold him in arms, will cry loudly when he is unhappy and will stop crying at once when held up by someone, can respond actively to stimulation of new things or strangers, and can accept the food he never tried before.

I believe he has achondroplasia, but also has extra thumbs.

Now before I go on, I wanted to add something very important.  You see most of these little ones aren't walking yet, which CAN freak some perspective parents out - BUT think about their anatomy.  There heads are BIG, their torso's are normal length and then they have their fabulous BUT short little legs trying to hold everything up.  It takes jsut a little bit longer.

So here is the developmental milestone chart for children with dwarfism.  Please use this before believing that one of these children are delayed.  They will walk they jsut have a few hurdles to overcome first!

Two years - 

Two Years - 

Two Years -

I noticed something else about 2 years - the older children with dwarfism have sat on the list for over two years!  Again why most have nothing else wrong with them besides theya re short, a bit stocky.  They are SMART, and most importantly HAPPY.  

Everyone LOVES FeiFei 

THere are currently 25 children available in China with dwarfism

10/98 Fred ages out in Oct - look at him he is awesome.  He is an outgoing boy who was not too shy when talking with us. He attends school outside the orphanage and is in the 2nd grade. Because he has grown up in the orphanage, the orphanage started him in school at a much later age than he would have started had he grown up in a family, but they report that he is quite smart. He’s a very good student and above average. His favorite subject is math. He has dwarfism. He enjoys playing when outside of school especially with a ball.

8/18/05 Jonathon has the \"gift of gab\" and can read people. He has rich facial expressions when speaking. He can speak a sentence of 5-10 Chinese characters, ask “what is it” on his initiative, can take off socks, can unbutton and put on clothes, can button clothes and take off unlined clothes. He can state the purpose of daily used commodities, can count his fingers and recognize numerals, can learn to put away toys after gaming, likes to imitate others’ actions and expressions, likes to play with peers and get along with others well. He has a shunt put in to correct his hydrocephalus when he was 1.5 and had good recovery. He is very clever and lovely.

Don't let the shunt or hydrocephalus scare you - this is a rare but still typical "side effect" from the achondroplasia

11/30/07 Howie is darling all bundled up!  Since 2009 he has been receiving care from Half the Sky in a group home setting. Under the carful attention of his foster family, he has been excelling! Attention has been given to language and motor development especially. He is now able to express himself verbally, run and jump, and understand emotions. His foster mom takes him to the zoo sometimes, where he is able to identify many of the animals. The monkeys are his favorite!

6/13/06 Hudson is darling little guy also in Half the Sky program.  

6/4/02 - Doesn't he look like an all American boy already!!

So many wonderful kids jsut waiting for someone to come get them - if they remain in China they are considered a bad omen and will have very little future.  Here they can be engineers. Dr's, business owners whatever they choose to be but atleast they will have an option.