World Dwarf Games 2013 part 1

We have been MIA and for good reason!

Almost 4000 miles in the car with 6 kids over 3 weeks.

But despite some of the typical, we had an incredible trip.  Since I can't find the photo card from the beginning of our trip I will blog backwards.

THe highlight of our trip - and the reason we planned it in the first place was the World Dwarf Games!

WHAT!! ~

400 participants from all over the world ranging in age from 3 on up.

A week worth of sports

At MSU for the 30th anniversary

And the most amazing athletic Little People I have ever encountered.

We really went for Brahm - it's been a tough year.

We signed up Fei and Tao for the Futures division since we were there.

We didn't know what to expect, we thought little people ~ really how athletic can they be.

It was SHOCKING!!

But lets start with our littles - the futures division was 6 and under.

We did Track and Field, Soccer and Kurling.
Since this was international competition we had to make the decision in May!

We wanted to get Fei off the couch - instead she got the taste for Gold AND rocked it!

They both got medals, & made a ton of new friends from all over the world.

But I will let the pics tell their story!

Opening Ceremonies!

Little man dead last but also the youngest!!

The littlest athlete!

On her way to a gold - with friends cheering her on!!

All American Athlete!

A taste for GOLD!!

Hugs from new friends - because although we were there for the sports, the friendships will last for years!

Onto soccer - Tao wasn't the biggest fan LOL!

His idea of running down the field was to hold his arms straight out until someone picked him up!!
Pretty sure he was DONE at this point!!

But Fei got it - Cheers after scoring a goal!!

MSU soccer players coached and referred -
UMM, yah think you could run me to the other side?!?!

New friends became his biggest fan (ok besides mom and dad!!)

Daddy's big day!

Whew what a packed 24 hours!

I co-lead the women's ministry at our church, and in November I made the committment to help host the wonderful ladies on our team for a thank you dinner.  This has been the first real night event we have done since we got home.  It also left without an evening to help the kids with everything they needed to accomplish.

Today was daddy's birthday AND daddy day with FeiFei at school.  Soooo, I got my older kids to help make a card for daddy, help FeiFei decorate the hat they needed for school, and find her a daddy outfit.  They also decided to decorate the - ummm - the burnt slightly dark cake which I couldn't serve the ladies and left for the kids to devour.

When I got home, I found this cake - heehee those are grapes on top, and I have NO IDEA where they found frosting!

A darling card which was a collaborative effort.

 FeiFei this morning in her cute little Daddy's busy bee shirt, waiting to show her beloved Baba his hat! We realized this week she had no idea what a daddy was since have maintained the Chinese term for daddy - Baba.  So we tried to explain that daddy and Baba were the same.

Gotta love this hat!!

So cute together!

Makes me fall in love with this man all over again!

Medically Crazy!

Can I jsut say I am exhausted!  We had regular pediatrician appointment that lasted almost 3 hours yesterday and then an orthopedist one today.  Since I formerly worked as a nurse, I do hand pick our kiddos Dr's to ensure I am not just a number.  I am truly glad now that our kids are medically unique to say the least!

Pedi - everything was pretty good all the way around.  Mainly, I was thrilled that their hearts sound good as we were a little freaked about Cav in China, 4 limbs having issues can include heart issues also.  Now don't get me wrong, I am absolutely in awe of the parents who adopt children with heart issues, but I think my nursing past jsut gets in my way.

We got the scripts for lab and stool, urine etc.

FeiFei's vaccines were translated into English so she only is minimally behind.  Cav however I think they are going to start a catch up - redo plan.  I think the fact that his medicals completely missed his hands really left the Pedi with little confidence in them.

FeiFei - will also see an audiologist simply because we have no idea how many ear infections she had and if she has an damage (dwarf thing.)
And have a sleep study since she snores really bad and oh yeah it's another dwarf thing.

Cav - Consult for a developmental evaluation aside from the schools.
Genetics - this is because we now have something wrong with all four limbs

THEN today we went to the Orthopedist.  Since our three youngest are all in the ortho realm this was our BIG appointment we made in Nov!

Let me jsut say DON'T FORGET THE IPAD when you take 3 preschoolers to any Dr appt!  I felt like this by the time I was done!

Seriously, they were all very good it was jsut a very LONG appt!  

We played in and made a mess of the room for quite a while!  Luckily, FeiFei had her purse and momma brought snacks and a pack of Go Fish cards!

After we introduced each one to the Dr we went for x-rays.

Let me jsut say this was NOT one of my finer moments but the inconsiderate and idiotic jsut doing my job ma'am x-ray tech threw a fit that I was bringing all three little ones into the x-ray room when he called for little man.  He said I have 8 x-rays to do - I was like Dude, the next three are all my kids besides where exactly do you want me to leave the 2 non english speaking ones!  Besides the fact that we planned on little man missing school today so he could show the other two that it was a no owie appointment and to stand still.  

He finally went to get the Dr to complain about ME and she was furious with him.

Anyhow, we got it worked out.  And all of my sweeties did fabulous!

Checking FeiFei's cervical spine

I was so proud of this little guy, he calmed when I went to him and of course it helped that I had little man run and get my iPhone so i could use the jibbigo app.

Sorry for the crappy cell phone pics, but an 8:30 appt I was just glad everyone had underwear on!

SOOOOO. . . 

Prognosis ~

Feifei 

1. Her cervical spine looks fabulous and NO evidence of instability!
2. Her legs are . . . STRAIGHT!!  Awesome, as most little people have some bowing over time.
3. Definately has Achondroplasia
4. She is so good we don't need to take her back for a YEAR!!

Little Man -

1. Ugh he all of a sudden has a 19 mm leg length discrepancy
2. She sees NO evidence of his epiphysis being different
3. He is now classified as UNDIAGNOSED again!  I could jsut cry as this was out of left field!

Cav Legs -

1. He definitely has Tibial Hemimilia (1 in a million birth defect)!
2.  Left side actually has a smaller tibia, and she is thinking a below the knee amputation or symes
3. She did say she thought he had no ACL in this leg so I am not sure how that will play out.
4. Right side - NO TIBIA at all.  This also means no knee joint so this will be a through the knee
5. we will wait for bonding and language before amputation
6. His hips were great
7. His spine abnormality will correct and she thinks it was due to laying in bed so much in the orphanage (similar to the dwarf kyphosis that disappears when they begin to walk!)
8. She gave me the idea to buy shin guards to help him not get so wet when outside!

Cav Hands - 

1. If you remember my in China post we had no idea he had anything wrong with his hands before meeting him.  But I immediately noticed they looked like 5 fingers.
2. We found out that the 1st metacarpal is underdeveloped
3. His thumbs are NOT opposable at this time
4. We have an appt with a hand surgeon for Feb 2nd
5. We are possibly looking at lengthening the bone that is there
6. The current "thumb" might have to be rotated down 
7. I am thrilled to know we can do something to "fix" this!

After we were done we ran down to Daddy's shop and stole him away for lunch.  We discussed x-rays over pizza as I knew he would be livid over little man's newest non diagnosis, diagnosis (this is probably the 11th in 5 years.)

Oh and the dishwasher STILL doesn't work, you know the new one installed on Jan 5th, the motor doesn't work and they will be back on the 18th!

I have to laugh as one of these things would have sent me into a tail spin even 3 years ago, but I guess our new normal is so crazy that we jsut go with the flow - oh and believe that God has a plan for all of us!

Small but mighty!

I so often get questions about having a child with dwarfism.  AS our little man gets older we encounter different issues.  THis is the really the first year that we now are seeing a significant difference in size.  Of course little man is my sports kid.  He lives through sports, and due to his progressively deteriorating joints we never know when he will "peak" but we do know it will be young.  So despite the recommendations from his doctors to limit his sports, I also have to weigh that against his heart.  DO we crush his spirit or give him the glory of playing for a few years atleast.  This has by far been the hardest part of this journey.

Oh why could little man not have been born with a love for sitting quietly and drawing!

But when I see these pictures I know that we have made the right decision.  He may miss playing sports later in life but atleast he will have had the opportunity to shine.

My baby is a Kindergartener!

A new outfit picked out by little man

Overjoyed little boy who is now going to school with the BIG kids!

Obligatory pictures with the princess (cuz big brother still had the day off!)

Which hand for the pledge?

Off I go (poor mom missed a pick of the kiss!)

 Going into my class and unpacking my bag!

Telling me all about his friends, the classroom, and their first project The Kissing Hand!

Only 3 hours of Kindergarten but a gigantic step from baby to boyhood!

First let me say it was kind of a strange day!  My sweet little man started Kindergarten today.  I stood in the cafetorium with about a thousand other people and watched as my little angel, the one who I have spent countless hours worrying about, traveling across the country for a diagnosis, and fretting over every bit of his well being.  BUT today he entered Kindergarten and walked off with is friends turning to blow me a sweet little kiss.  Normally I think I would have stood there with the other mothers and balled, but I also realized that although he is my baby, I have two others coming.  Soon, my baby will actually be our middle child.  So I sent him with all my love, my admiration for his incredible spirit and prayers that he wouldn't say anything so inappropriate that he got to meet the new principal before he had the chance to charm her!  Is that so weird!

Yeah. . . we're finally DTC!!

You say what!

Our dossier - all of the paperwork mom's been working on since we found FeiFei in January.  

It is finally on the way to China!!

OK, I don't have a picture of a fedex plane so I figured a picture of our beloved thunderbirds and the AFA from graduation in May!  

Happy Fourth America!!

We had a low key Independence day with our fabulous little guy!  You see Away camp had a SALE!! for this week.  What's a momma to do - send the two oldest.  Now mind you I believe I registered them during an especially rough evening.  Now my kids are pretty good, but there are days . . . especially during the summer.  Anyhow, the church bulletin mentioned that this week was on sale at the camp they LOVE!!  It's about 2 hours away so I wasn't going to take jsut one - so both big kids went to camp this week.

Our big guy was in a cabin of only four kids!!  He is at such a funny stage in life - 12 1/2.  He tells me 'Love you mom' more often than in previous years.  He came to give me a side hug while I was at the princess's cabin.  This was his only chance at away camp this summer so I was thrilled we were able to figure out a time for him to go.  He wore dirty jean shorts and brought jsut one more pair for the week LOL.  Boys will be boys, but atleast I don't have to be with him!!

Princess at her cabin!  She of course packed a ton of clothes.  We couldn't check into camp until 3:45 pm but she was ready to go at about 9 am.  Last time we went we were late, and she had to settle for a bottom bunk.  This year she made sure she got a top bunk (much to her momma's detriment!!)  Even at 9 she is already sowing her oats, and quickly rushed me on my way!!  Girls, and boys are sure different little gcreatures.  Of course, the fact she has been going to this camp since she was 7 helps with her independence!!  I sure hope they have a wonderful time!!

As for the fourth, little man and I went to the parade.  Daddy decided to drop us off at the last minute so we wouldn't have to wait in line for the bus etc.   We were lucky enough to find some friends in the crowd and got front row seats!  Now little man draws a crowd where ever we go, and the parade was no exception.  Some of our big guys friends saw him and gave him high 5's and everyone else fell in love with his infectious personality!!  He was  a candy collecting,  clapping fool!

Of course his faux hawk decorated with colored hair gels didn't hurt!!  Designed by little man himself with jsut a little help from momma!

Yeah, Yeah, Yeah!! I800-A

We got it!  After a very long wait for our I800-A and an RFE because our agency forgot to include our marriage certificate we got the approval today in the mail!  I do have to say though that they allowed us to email our marriage certificate and got the approval apparently all on the same day!!  Thanks USCIS!

Received April 14, 2011
Notice April 19, 2011
Fingerprints May 16, 2011
RFE received June 18, 2011
Approval June 20, 2011
Received June 23, 2011

And this is how I feel about this part of our trip!

Tomorrow to Denver to get our authentication and then Fedex to our agency!

Searching, searching, searching

So funny, our little girl came in the email.  We did go through tons of the available child sites like Reeces Rainbow and Rainbowkids searching for a special needs child.  We actually were looking at several other children and each time they already had a family pursuing them.  Then our little girl came in my email!  She is so perfect for our family, spunky, outgoing and well her own girl.

We (as in I again) have been searching for a little guy.  We thought an estimated million kiddos up for adoption in China, how many provinces are there, and everyone is looking for girls.   I was sure that we would easily be able to find a little guy from Qingdao or atleast Shandong province.  Then we thought ok, maybe it's God's will for us to bring another child with dwarfism home.  So we searched, we went through the entire CCAA waiting child list.  We found that many of these little people are not always classified under dwarfism.  I found 10 possible little people.

THen I decided I better email or SW and find out exactly what our homestudy is approved for - good thing, it's only ages 0-6 years.  That cuts out a lot.  In addition, I will have a 5 and 4 year old with dwarfism in our home.  Can I really do this.  I am a normal person, I have come across some super people, and I know I am not one of them.  So, we are still searching.  If God really means for us to come home with two he will make it happen.  Have I mentioned that patience is NOT my best quality.

On the other hand, my husband came home from the weekend retreat and said his answer was 'not this one but another.'  It is so hard to turn down files, but I know I really need to make sure I am not putting a square peg into a round hole either.  So we continue to search!

Yeah . . . we got our fingerprint appointments!

Two letters from homeland security and we are one step closer!  The appointment is almost 3 weeks away but atleast we have a date!