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!

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.  

Whisperings of his soul.

 AS I sit here not doing the thousand things I NEED to do before I go get Griffen, I decided to edit pics from the weekend.

The more I looked at these pictures the more I got teary eyed.
How can I possibly sit here feeling sorry for myself
for the craziness of the past week, month, summer.

My boy, you know the one with the 'disability'
doesn't feel sorry for himself
but accepts the life that he was given
with so much heart and zest for life.

It won't take long to figure out which one Brahm is in the pictures below,
and then I hope you see his 'go get em' personality.
We don't know how long he will get to play
because of his deteriorating joints and chronic pain.
So we let him play for now.

My boy with a heart for sports,

we must weigh the whisperings of his soul

with preserving his body.

You can't put a limit on anything.

 The more you dream, the farther you get. 
Michael Phelps 

SUnday Snapshot {florabella}

I bit the bullet and had to buy Florabella Colorplay! (they had a coupon on their FB page!!)

I have held off on buying much of everything for a long time . . . cuz you know 3 adoptions in 1 year and so many friends also adopting and in need.

BUT, I also know my soul and I jsut don't have the time to fiddle with photographs like I did before.

So I purchased, and while I cuddled with Fei as she recuperated I went through my file of most favorite but never edited pics.

I came across the one below taken when Brahm got a black eye!

But truly it speaks to me how he takes on the world.  Despite being the size of a 2-3 year old (he has dwarfism & is 6) he played lacrosse against kids up to 9 years old today.  He is an inspiration to everyone watching.  

Photo specifics ~

Besides the fact that his hair and eyes are the SAME color, 

his eyes truly speak to the soul (or maybe just mine!)

Canon 5d

50mm lens*

Florabella Colorplay Recipe ~ 

Perfect color

Organic 58%

Ethereal 5%

Dramarama 65%

** If you look at his picture, since I used the 50mm lens his focal plane is very shallow.  Because of Brahm's particular type of dwarfism, his head is long from front to back.  You can totally see in this picture how blurred the 'forehead' area is.

Fortune Cookie

FeiFei is HOME!

Apparently she woke up this morning and told Daddy she was going home - it was 6 AM!  The Dr and his entourage came in and she told him the same exact thing.  That princess of ours!  He said after you poopy (making sure all of her spinal nerves were functioning).  She didn't believe him, so the nurse and another Dr told her the same thing.  Then Daddy was smart enough to call me.  He said after we hung up she said she needed down and of she went to the bathroom!

Have I mentioned this girl LOVES food.  They got home around lunch time and we treated her to PF Chang's.  (Yeah, I know what your thinking but she really was doing great!)

I'll tell you about that in a sec but first let me tell you that I jsut LOVE my big kids.  Truly they were all thrilled that she came to pickup (as did Daddy!) By that time she was starting fade so we held her but man were they excited.  Even Brahm came running across the school yard.  Her friends, and teacher also excited!

Our big boy came home from football and pushed past me "Where's Fei"

Luckily, I had my phone in hand!

Brahm sat with her all afternoon and played iPad and squinkies

Friends sent her a special treat ( can you see how she guards her neck)

We are trying to have her take it easy, but truly this is hard when she was raised NOT to be different.

Even when we went outside she was upset that she couldn't.  

Please pray for her heart over the next few days!

Ok and now onto PF Chang's ~ this was my fortune LOL!

Not for a minute do I think that this is NOT a Godwink!

I had totally missed that we had been CABLED!!  I sent it to our agency which was closed already but we should be onto our Article 5 soon!  Never a dull moment around her!

Thank you from the bottom of my heart for your prayers!  We truly stormed heaven with all of the continual prayers AND that is the only reason to explain how both of our kids came home jsut 2 days after MAJOR, MAJOR surgery!

Fei's surgery

So we are 24 hours post op, and I have to say that although I lacked the complete faith that Fei would make it through the surgery, I knew if she ultimately went to be with Jesus, she was ready . . . and truly can we ask for more as a parent.

The unfortuantely part of our situation is that the 50 mile drive is almost all country, which leaves time for A LOT of thinking . . . AND crying.

So yesterday Fei and I packed up our stuff, and left for Denver.

My sweet smiley girl was actually excited for her trip to the Dr and of course the bag of goodies she spotted.

Although it was a late - squeeze in- cuz it really needs to get done surgery, they actually started right on time!  I have to admit I did apologize to the Dr's for such a long time, and they all showed us such Grace.


Remember how the anesthesiologist was such a Blessing during Cav's surgery.  So in walks in a Texas cowboy (cuz he was too cowboy for Colorado.)  After talking to him, I found out that he not only LOVES doing anesthesia for neurosurgery but actually teaches about this surgery and the special considerations required for children with achondroplasia!  OK God totally had our Fei in his hand!!

Took her to the back and left her with my now favorite cowboy!

My dear friend who drove all the way from the Springs, jsut to sit with me, walked with me to Panera's for a bite.  (cuz they have to get the ok from the surgeon for you to go by car.)

One of the nicer things about such a major surgery is we had our own waiting room.  So we sat and talked and watched the clock.  It took 3 hours to get the arterial line (so they could monitor her blood pressure) in her chunky little self.  Just about the time they called I was pretty close to panic.

The actual surgery only took 1 1/2 - 2 hours.  She did great!!

She went directly form the OR to the ICU.  Shortly after she was settled they came and got me so that I could spend the night by her side holding her hand through the rails.

She really did well, even though they had to wake her EVERY HOUR through the night to check and make sure she was NOT showing symptoms that might indicate neuro issues.

Morning after

So thrilled to eat something!

Daddy and Cav mid morning, and we switched off.  About that time she started waking up more.  Of course we had an issue with Cav whether the change in routine, attention on Fei or a bad day but we left the ICU with him screaming all the way home (until he fell asleep 10 min from home ugh!)

Fei is still doing fabulous, and loving her daddy there catering to her every whim.

Loving my Starlight bear!!

Her doll and blanket from teh kids!!

God has so incredibly blessed our family.  Though we have been through a lot this summer, we have truly been blessed by kids who have a great spirit when it comes to recovery!

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.