Tuesday, October 30, 2012

His Faith

I have menioned on here before we are not cradle to gravers - but we plan to fulfill the rest!  In fact we had been away from the church for over 20 years.  Then 7 years ago all of that changed.

Seven years ago, this boy of ours finally was baptized and we began to follow our journey that God laid out before us.  We are Lutheran - we don't believe in works based salvation.  We didn't adopt to be saved, we didn't adopt for any other reason than God placed these children on our hearts, asking who will go to my children.

We simply said we will.

As I have mentioned before, while we were in the process with Fei
 the number one question people asked us was
"What are you doing TO your bio kids."

Our journey was CONFIRMED this weekend.

When our oldest became a member of the Lutheran church through confirmation.

Below is a snippet of his FAITH statement
he wrote by himself.

"God has given us many blessings that we are unaware of. He gives us the sunny days and entertainment. He has given me my family, my adopted brothers and sister and my biological brother and sister as well. God has chosen us to protect and save these three little children. Even though our latest miracle story is still in China everyone in our family has opened their hearts to Griffen. I feel it is my duty to protect my brothers and sisters and the rest of my family. A phrase that God has presented me and my family with lately is “Man up and protect the fatherless.” Meaning let us take care of the orphans and the widows and let us run with perseverance this race so marked out for us, for non of us know what will happen until it does, which we can either learn and build off of the mistakes or let them hinder from our race for God."

Of course, I was shocked when I heard his statement for the first time.  I know I was not so strong at 13 and truthfully as I sit here, broken hearted over another day without my TA, Hurricane Sandy, and our agency in Delaware, I wonder if I am that strong NOW!   I read the last line and smile.  My crazy impatience has truly hindered from my race.

His gift was a poster I created using his verse Hebrews 12:1-2

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us runwith perseverance the race marked out for us, fixing our eyes on Jesus, the pioneerand perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.

Sunday, October 28, 2012

Another First

It's funny, I almost have to look at pictures to remind myself that Cav and Fei were not here last Halloween.

That is until we talk about Halloween and trick or treating and they give me their stare of confusion.

Yeah, lets see we dress in funny clothes, go door to door, and ask for free candy - who's the orphan now!

Anyhow, it is times like this where we are seeing the biggest gains from Cav especially.

He used to freak in a crowd, unable to filter out the noise, activity and people touching him.

We have had a melt down everytime we have gone to a large event but now not until the end when we are leaving.  I think he works so hard to hold it together that when we are done so is he.

Most people are well meaning but have no idea the effect touching him, picking him up and hugging him has on his central well being.  It breaks my heart, and usually I am ticked at the constant people who jsut don't get it.

Really, I have determined that touching and hugging our adopted children is almost as intimate to them as if I were to pick up their child and breastfeed them.   

I wonder why the people can't see the look of confusion on their faces.  But these people are also aren't enough "in" our lives to see the meltdowns later.

Anyhow, that brings us to this afternoons activities.

We carved pumpkins. . . CAN I jsut admit, I HATE pumpkin carving - or atleast the tactile part of the cleaning.

It's slimy and makes my skin crawl.

 It dawned on me - this jsut might be how Cav especially is feeling in crowded places, being touched.

Heehee I even bought the stick in face pieces hoping that would be enough - but NOOOO!

THey cleaned, they carved, and even our little ones had fun, being outside, together, laughing.

The giggles by far outweighed the tactile issues

And really there is nothing funnier then Cav determining if this was a treat or not!

I have to say this was a great First for our little ones!

Add caption

Ni Hao Yall

Friday, October 26, 2012

Griffen's care package

Our little man is in a very closed orphanage.  This means no information, no updates and no pictures.  The only reason we got the minimal information in March/April was because his file was over a year old and we were not sure if he was even still alive.

Luckily, there is a very active yahoo group which I have devoured for information.

I was heartbroken to find out that Griffen will be moved from his foster home back to the orphanage about a week before come to get him.

I can partially understand the reasoning (the assumption is they won't relate us with the loss of the only family he has ever known) but oh it jsut breaks my heart.

 In fact, it has been giving me nightmares,
 thinking of our little 2 year old,
all alone again crying himself to sleep,
in a strange place.

So, I jsut made the decision to send him a care package in hopes it will comfort him while we are gone.

A blanket to keep him warm,
a lovey,
and of course a book of our family.
Hopefully, the backpack also arrives to carry all his stuff LOL!

We actually used a different agency to send the items this year and it was way cheaper.  So even if he doesn't receive anything we pray the warm blanket and lovey will be used for a new baby, as the cycle continues.

This time we used Lillian & Gretchen with http://www.chinaadoptionhelp.com/ and is was so much cheaper we could take the chance!

There is mixed information about whether he will get it during this week of heartache but we are praying he will.  especially since there will be minimal time between it arriving and his arrival.

pLease would you pray for his heart over the next few weeks.

No Travel Approval today but we told our agency we would be ready at the drop of a hat.

Thursday, October 25, 2012

More Cav while we wait

I know I have other children LOL!

And we are waiting on our TA - which makes me want to sit and check the computer non-stop instead of the 1,000 things I need to do LOL!

We are yellow (this is the chart on chinaadopttalk under forums)

BUT this little - um big guy keeps us hopping!

This is how our day on Tues went

Leave the house at 7:30
8:15 - OT appt all the way down south
forgot the dang handicap sticker so run carrying his slow self to be remotely on time
call hubby to bring the sticker on his way to work.
Hubby arrives while OT is making splints for Cav's hands to help with the suspected carpal tunnel

9 am - leave OT an race back up north for our 10 am appt with prosthetist in Denver wishing we had a helicopter LOL!

10:15 - arrive - wishing I had, had time to stop for a coffee

10:15-11 - Mr Terry builds Cav's new legs, giving him a better knee and making him 1 3/4 in taller!

11-12 - Mr Terry teaches Cav how to use his new knee.  Shows me how to work it

Mr Terry - LOVES Cav and we LOVE him!!

His new KNEE!!  Gotta love the tool fabric on this leg LOL!

This knee is much beefier and he should have a more normal looking gait.  By touching his toe it bends then swings through.  He has a bad habit already of swinging his leg out to the side.  Also this leg set up will allow for him to run - we already seeing him much faster!!
12 - leave the prosthetist and promptly get lost on our way to Denver Children's for 1pm appt

1:05 - finally arrive, use Valet, see Mr Terry walking into Denver CHildren's and again run to our appt.

1:15 - Meet the hand surgeon recommended by the amputation Dr.  Well, first we met the fellow and medical student.  Show them Cav's funky hands, tell them he needs working thumbs to get his prosthetics legs on and off.

1:45 - Meet the actual hand surgeon and he takes about 2 minutes asking Cav - can you do this, how about this.  Light bulbs start flashing over everyones head as we see him try to lift his thumb away from his palm without using his fingers.

1:50 - Diagnosed with mild Radial Longitudinal Deficiency - if you think of the arm as a leg, the radius is the same as the tibia.  Basically, jsut like his longer leg and foot didn't develop right, the same happened in his arms but even more mild.  THe radial bones are a tad short but we will watch that for now.  But it caused his thumbs to become hypoplastic, and he is missing some ligaments.  This is why his thumbs have no strength and look like they dislocate when he moves them.  Heehee as I was writing stuff down on my phone - he kept saying if you google it you will see so, and so.  I finally told him that if our amputee Dr trusted him then so do we.  I jsut needed to write down the words for my husband LOL!
So Cav is between the B and C pictures
So, we are looking at tendon transfer surgery on both hands.  I also showed him Griffen's extra thumbs (cuz you so know God has a sense of humor LOL!)  We can do both boys on the same day.  The big question is should we do both of Cav's hands and be done or one at a time.  He has to do OT after they heal and this is where our insurance is lacking.

2:00 - Throw out the new splints

2:15 - Move a few halls down to see the amputee team.  I love the clinics but man it is overwhelming.  I am sure there were no less than 12 Dr's, therapists and prosthetists.  I lvoe this group - they rejoice with us at how far this boy of ours has come.  We got a few hints, they were amazed he had the knee for only 3 hours and was walking on his own, and were discussing at what age he can join the Children's ski team LOL!
X-rays to check alignment
**Cav wears his legs from the time he gets up (and momma remembers to get his socks) until bed.  They said they have never seen a bilateral amputee take to his prosthetics as well as Cav has.  I truly believe that this is because he was different without his legs in the orphanage.  And if I know anything, I know that my Chinese kids don't like to be singled out**

3:40 - finally, in the car and realize we jsut might have enough time to race back to the Springs, and see Tristan's wrestling match.

4:45 - walking into where the match is at and my phone starts dinging!  Yep, all the mom's and my hubby texting me to say he jsut won - dang!  We still went in, congratulated him in the hall and Cav got to show off his new knee to the biggest fan club!

Since daddy was home early we all went out to eat and really had a fun night.  

Friday, October 19, 2012

Holy Cow!!

I am not sure if you remember but when we first got Cav and did our first once over - we noticed that his hands were ODD.  As in his thumb looked like another finger, without that space for webbing.

But more importantly - in children with limb differences, all 4 limbs affected = a syndrome.  We went from a 1 in a million birth difference to the possibility of having EYE, KIDNEY and HEART issues.

One of the reasons my husband and I had to discuss the big D word - yep disrupting is the nice word, leaving him behind to suffer the consequences was the reality.  And so you know he came home, with his funky little hands LOL!

Since this was a new diagnosis we didn't have a Dr waiting at home to see him.  We went with who the sent us to, and it was confirmed that his hands were not developed correctly.  I discussed it HERE!

Needless to say we were saddened.  When we saw the hand surgeon he said to wait until Cav was 5 as the "fix" was a tendon transplant from his ring finger - ugh.

Because he also didn't have the THENAR muscle - the muscle below the thumb.

Once Cav got his prosthetics we realized we were going to need some help for his hands.  He can't get his legs on and off on his own as he has no thumb strength - yeah momma's not going to be there to take his legs off when he goes to college LOL!  We also realized he needed help with pushing his wheelchair correctly and using the walker.  Both of which he splits the thumb and pointer on one side and the other 3 on the opposite side.  Not real effective LOL!

Besides, his hands look just like monkey hands (which is the true term LOL!)  The Pinkie side is much longer, and the thumb side is under developed.

One advantage of our amputee team is that they got us in with the head PT who also agreed something needs to be done.

So we finally got in with a hand picked OT (as in confident enough in her skills to think outside the box.)  After a 2 hour exam she looked at me and said "I think he has given himself carpal tunnel from having to move around on his hands for so long."  

As in he DOES have the Thenar muscle 
(he wouldn't be able to do any pincer grasp without it)
he HAS the crease right next to thumb,
meaning there is the muscle!

So we will be taking both bits of information to the Hand Surgeon in Denver who our Amputee team hand picked.  Low and Behold that appt is Tues.

Regardless I am beyond excited.

It will mean splinting his hands, he might look like a dork for a while BUT oh if we can make that thumb muscle stronger and teach him to use his hands correctly - I could jump for joy for our BOY!!

AND ***Just in***
He had a meltdown at a church activity tonight (nothing new) but when we came in the house, he said sorry mom and then when I picked him up he laid his head on my shoulder and let me rub his back.  

It truly has been an amazing day! 

Wednesday, October 17, 2012

Cav's legs - 1 month

Yeah, I am a few days late but I wanted to share our miracle called Cav.

Since he is our son, I often forget how much of a miracle he is . . . and how much he influences those around us.  His amazing accomplishments really seem to hit people in a visceral way.  He is truly a testiment to God's amazing healing power.

SO a little look at our life and how his legs have changed his/ our lives.

He loves being upright especially at school!
  Being able to participate WITH his friends in a whole new way.

These are his cute little feet and piggies.  Our kids were so excited that he has a slit between his big toe and second toe so he can wear flip flops.

Of course we had to have an emergency visit with Mr Terry.

Cav's stumpies shrunk some from walking so much and we didn't realize we needed to watch for this and then add more socks throughout the day.

Luckily, our PT noticed and we got an appt.

Do you see that silver piece - yeah he busted his knee LOL

Luckily, we were still in Denver and so back to Mr. Terry

Roller chair races but I was to tired to stop them.  Besides he needs to learn to push with his leg.

We still are working on throwing and other things but look at that boy stand and balance!


Let me remind you he has NO feet, he can not feel with his feet where his is on the cargo net, he can't balance with his toes.  He has only had these legs for 1 month and still he amazes us!

Moving forward

Loved being able us the pics from Qingdao although not sure if you can tell 

We definately have ARTICLE 5 (A5)

And we are couple days into the wait for TA - Travel Approval!!

Monday, October 15, 2012

Got Armor!

My kids would answer the sky LOL!

Ok I have been remiss on updating where we are at as far as Griffen.


I am shocked we are here already but I THINK we are waiting on TA.

I say I think because our agency doesn't track the Article 5 like other agencies.

AND we again got smacked with another holiday (if you followed us last year we were constantly getting stuck by holidays!)

So, we were cabled on 9/21 (this is when we got our PDF from USCIS)

So we had all of the week of the 24th for our A5 to be worked on.
THen everything was shut down the week of the Oct 1st for Autumn Moon Festival.
Of course the consulate was also closed for Columbus day on Monday, Oct 8.

SO, were our papers dropped off on 24th and picked up on the 12th.

Or worst case dropped off 10/9 and will be picked up on 10/23.  Who knows 

CLEAR AS MUD LOL!  Basically, we are planning on Thanksgiving in China,

Tristan - my oldest is coming with me.  I really prayed for clarity in this decision since both kids have definite positives.  Now that we made this decision, I am so at peace.

We will probably be flying directly to Kunming and not sightseeing.

We are starting to get everything together for our trip and daddy staying home with the kids LOL!


Satan has been working overtime in our house.  It started with Chris's car accident and jsut has been coming left and right.  I feel like my Armor of God is constantly being pelted BUT you know I sure am glad I have that armor on.

The hardest part is our big boy also seems to be under attack.  Another proud moment when I explained Satan and adoptions - he said "MOM, I'm still going to China regardless."  I had once seen Armor of God coins and so wish I had bought them.  PLEASE, if you know where to get them can you please let me know.

So please pray a hedge of protection around our family,
Pray for Griffen's heart ~ and that he melds seamlessly into our family,
Pray for our Visa's which we still don't have,
Specifically, pray for Cav, who seems to be sensing the stress and has gone backwards significantly.

The Armor of God

10 Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God, so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand.14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God.
18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.

                                                                      Ephesians 6:10-18

Thursday, October 11, 2012

We got ours. . . do you!

You know this girl has our heart!

Spread the Joy

You know we love sweet Ivy, her family is the sweetest people, I have never met.

But Ivy, she is just a couple weeks older than our sweet Griffen.

She is as teeny as him - a 2 year old 
the size of a 9 month old.

She already has been through more in her life then most in their 90's 
HECk, she has been through more than most families

Sweet little Ivy has only one chance at survival AND 
so her family are taking her to the BEST!

All the way from Arizona to Boston.

BUT there are expenses, flights, copays and out of network.

Some amazing people have come together to create the cutest shirt EVER!

A very special shirt for Ivy Joy!

Would you please support Ivy's family

Tuesday, October 9, 2012

Vote for Brahm

OK just call me pathetic, but if you love little people - especially our little man go vote HERE

for our little dukes up dude!

Monday, October 8, 2012

Boy/Girl Room transformation

We always just figured we would throw Griffen into the little boys room which conveniently has a bunk bed and trundle.  However, our little boys are also the worst sleepers.  Although Cav has come a VERY long way since getting home he still can be a light sleeper *  And Brahm - well Brahm slept in our room for way to many years, is the biggest dang negotiator and all around a pill when it comes to bed.  Also he wakes screaming with leg (joint) pain on occasion.  I really, really was having heartburn over three little boys all trying to sleep in the same room.

Next door to the little boys room is FeiFei's room.  They share a jack and jill bathroom which is super nice.  Anyhow, someone suggested having her and Griffen share a room for atleast a few years.  Besides, she is THE best sleeper EVER!

Luckily, we made this decision right at the end of summer which means SALE!!

So we changed FeiFei's darling sea room into
  (I mean we as in I and my husband would walk by an cluck at my nesting LOL)

Into a darling boy / girl room which coordinates,
 was all on sale
 and hopefully isn't insanely busy looking.

So the bedroom furniture FeiFei had was actually originally Brahm's until we got the bunks.

It is the pottery barn kids Kendall I think which they place on sale around Christmas time.

I was so thrilled that I found a matching toddler bed at Target - YES target!!

Curtains are the bane of my existance.  I took down her pink silk curtains but alas PBK didn't have any curtains on sale.  So I found some sheers at Kohls but I am still not sure.  Or how to do the curtains BUT
Don't you LOVE the woven fish valance!
Hopefully, it doesn't look stupid.

They were on super sale so you know I HAD to get them!

 Hopefully Griffen isn't scared to death of his giant woven shark
(cuz you know it was also on super sale LOL!!)

**Ok on the light sleeping.  This has to do with the seratonin levels (according to Dr Purvis) and Cav's hypervigilant state he must have been in, in the orphanage.  I have seen light sleepers but this was beyond ridiculous.  We had music playing, a white noise air purifier on high and any creak in the room he would be awake.  And not the sleepy awake of most kids but ready to duke it out awake.  9 months later he still sleeps with the purifier, and music but atleast I can walk past the room without him waking up.

Friday, October 5, 2012

Dwarfism awareness ~ size

Brahm is one of our 3 birth children.

His daddy is huge (as in 6'3" and 250 lbs (sorry honey!))

Brahm's big brother and sister are going to be big also!
As in his brother will be over 6 feet and his sister close to 6 feet LOL!

80% of children born with dwarfism
 are born to parents who are average height (AH)
which also makes me laugh because my husband is far from average height LOL!

This also means that FeiFei and Griffen's parents were also more than likely average height.

Now that our children have the gene mutation for dwarfism they will have a higher chance of having children with dwarfism, but they could also have children who are average height.

If they marry another person with dwarfism they will have 
25% chance of average height
50% chance of having a child with dwarfism
25% chance that their baby will die shortly after birth 
(due to receiving both dwarfism genes)

Also, there are varying sizes of people with dwarfism 
just like in the general population.

Because of his dad, Brahm will probably be a bigger dwarf then others with his type. 
FeiFei and Griffen may be smaller due to their Chinese genetics but we will see.

Wednesday, October 3, 2012

Dwarfism Awareness - Types

Did you know their are over 300 types of dwarfism!

However, the majority of all people with dwarfism have achondroplasia

This is what type of dwarfism FeiFei has.

Her arms and legs are short but her torso is actually about normal length. 
 So she is much smaller than her peers until she sits down, then she is right on level with them!!

We THINK (after so many genetic tests we have lost count) that Brahm has 
Multiple Epiphyseal Dysplasia

It means he is much more proportionate than FeiFei
Although his head is large from front to back.

On his growth charts, his head has always been 50% 
and his height and weight are way below 3% (the bottom line)

Also his hip and knee joints are different.
They are supposed to look like 1/2 a basketball
Brahm's are short and jagged which causes him his pain.

Griffen, well his type of dwarfism is still up in the air.

We think he looks like he has achondroplasia BUT he has his extra thumbs,
AND there is a type called EVC or six fingered dwarfism LOL!
So we will see when we get our hands on that darling little angel!

Monday, October 1, 2012

Dwarfism Awareness Month ~ never apologize

October is Dwarfism Awareness Month - 
I will be posting thoughts, information about dwarfism this month!

We WON!!  Ok I can't hardly contain myself, we won the Sunday snapshot here!!

To me this single picture reminds me so much of the face of dwarfism - tiny but mighty!

I kind have shared our story a little here, but I don't think I have shared how I felt.  I cried, in fact for months I would cry.  Everytime, I saw babies born at the same time, doing something normal I would cry.  I felt like we did something wrong to cause this.  This baby who we had 1/4 of 1% chance of getting pregnant with.  The baby who we prayed for, for years and were in the process of saving for IVF.  Our son who was a miracle in our eyes, conceived naturally against all odds.  Had I somehow caused our son to be born when God knew the heartache he would have?  What would his life be like, my poor disabled son - I say that very tongue in cheek because now I can absolutely laugh at it!

Somewhere along the way we went from protecting and sheltering him, to treating him like one of the kids.  We fell in love with his unique look, his big eyes and his happy disposition!

To us he was jsut our darling baby, but man when we went out it was a circus.  I don't fault people at all, especially when he began to walk.  I would jsut pray that we could get through the grocery store without being stopped.  But invariably, our trips would take twice as long.  I slowly learned to be an advocate and educater.  

Now imagine a perfectly miniature little boy running around amongst the shoppers.  And when I say miniature I mean miniature!  These are what he wore when he was potty trained!!

Do you recognize them?

Yep Build a Bear undies, (momma sewed the back shut LOL!)

I quickly learned who was actually interested in dwarfism, and who jsut wanted to exploit our family.  I learned that some people are jsut morons, I learned that others loved our son as he was.  BUT I also learned the biggest stab in my heart came from those that felt sorry.  The ones who profusely apologized for our son - really, he is the biggest blessing of our life!

If I could tell anyone anything - it is to NEVER apologize to a mother for her child!

Every child is beautiful, they are a gift from God and they are made in His image.  Please, I beg you to look at any child and find one beautiful thing about them.