Thursday, March 20, 2014

A Tribute To Shriner's Hospital



 
Jais had surgery in early January.

Our hope was that one day he could bear some weight on his legs.
 
We've learned that weight bearing is important for people to transfer (from wheelchair to chair/bed/car etc. and vice versa) so they don't have to use just their arms to move back and forth.  This is very tough and can be damaging to shoulders, wrists and bodies in general.

We feel so humbled and fortunate that Shriner's Hospital of Chicago performed
Jais's surgery....
 
What an incredible organization!!
 
If you ever know of a child that requires
special medical care-
 
Shriner's Hospital
is.the.place.to.be. 
 
This medical network of professionals and members is AMAZING to say the least.  

Each and every person cares deeply about kids and they make medical miracles happen every day......
 
Every day....
 
One year ago, I didn't know much about the Shriners.
 
 I mean, I knew that they wore red hats and rode around in little cars in parades :-)
 
Seriously that was all I knew.
 
If you have a moment, check them out-
It is a phenomenal organization.

www.shrinershospitalsforchildren.org 

Thanks to the generosity of the Shriner's organization, insurance coverage is not mandatory...If you have insurance, they bill it...

If not, they don't...

Either way, it's nothing out of pocket...
Can you imagine?
Nothing. 
 
A few months after Jais arrived home from Ukraine, I called Shriner's Hospital of Chicago, and asked if they could help my son. 
 
I shared Jais's story. 

They said they would see him. 
 
They said they would try to help.
 
In January, Jais had surgery.

In February, we went back to Shriner's for two weeks of inpatient, intensive therapy. 
 
This month, we are invited to a Shriner's Leadership Seminar in Chicago. 

We are honored.
  
They want to hear Jais's story...

We want to say thank you and show them how great Jais is doing :-) 
 
Here's a little video for the meeting,
about Jais and
the wonderful people
at 
Shriner's Hospital of Chicago. 

It was truly such a great experience!
 
What can you say about a group of people that changed your child's life?
 
Thank you just doesn't begin to do it. 
 
We will never forget Shriner's Hospital or the wonderful people that make such a difference in the lives of others. 
 
 

 
 
 
 

Thursday, February 20, 2014

A Big, Big Day!!!!





Jais's FIRST Steps.... :-)



 
 















So, so proud of our little boy!!!!


















Friday, February 7, 2014

Quick Jais Update


Jais has been healing and enjoying his time at home!
 
The purple casts are off.....
The soft casts are off......
And Jais is sporting his new AFO's and removable knee immobilizers that keep his legs straight.

 
 
And he can wear shoes now!!  He's so excited :-)
 
We are anxiously awaiting the call letting us know that the RGO's (walking braces) are ready and Jais can begin his 2 weeks of intensive therapy to learn how to walk.
 
HE.IS.SO.READY...LOL
 
While we wait for the walking to begin, Jais has been working on some other things..... ;-)
 









Friday, January 31, 2014

Flashback Friday

 
Summertime-Summertime-Summertime!!!
 
 
In August, we took the little kids to the State Fair :-)

 
 
 Mathis was pretty scared initially-
 
He had been home for only 4 months when his parents dragged him off to a place where the animals were HUGE, the lights were flashing non-stop, people were everywhere and the constant noise was over the top!!!
 
  (Sigh....Sorry Matte)
 
 
 



This was the first year that Emme got to ride on some rides :-)
 
(Sniff, sniff-Our little girl is growing up....)

 
 
What a day!!! 
 
We had squabble-less siblings....


 
Adventuresome kiddos....



And slightly nervous little ones....LOL


 
 
By the time we got to the cream puffs though....
 
EVERYONE was on board!! :-)



We have a saying in our family...
 
Don't do once
what your not willing to do eight times!!! :-)

Sean

Torre

Rio


Kia

Liam

Sean & Matte

Jais

Emme



I think you get the picture...LOL :-)
 
 
 
 
 

Wednesday, January 22, 2014

Woot Woot!!!

Jais's appointment went fabulously at Shriner's yesterday! 
 
His docs removed the purple casts and assessed their artwork/handiwork/masterpiece :-)
 


Conclusion: The medical team was thrilled with Jais's legs and feet and that he could stand up...(I sent them the video...LOL)  After the casts were removed, his legs were gently pulled/straightened further and his feet were positioned and held at 90 degrees so they could put on straight leg splint casts.....This process is sort of a casting method that slowly stretches his legs...

 
Next week, we will go back and they will remove the soft splint casts and he will begin using his new AFO's (the lower leg braces to keep his ankles in place) to heal until the next steps (pun intended...Hee Hee)

*****
Then to make the day EVEN more spectacular....
(DRUM ROLL please.....)
 
They measured Jais for RGO's (walking braces!!!!).... :-)
 


(Google photo)
 
(Hospital photo from yesterday-
It looks like Jais's RGO's will be more open around his tummy...)


The RGO's (walking braces) are customized and take some time to make.....But once they are completed, Jais will spend 2 weeks in Chicago for intensive physical therapy and walking training :-)  ..... 
 
They expect that he will be able to walk with RGO's and either a walker or crutches for support. 
 
 
It's a long road for sure, but as we have learned....
 
Jais is one determined little boy :-) 
 
 

 

Sunday, January 19, 2014

Amazing Jais!!!



Two weeks ago, Jais underwent some pretty major surgery to help straighten his legs and feet.

 
 
Prior to surgery, his legs were permanently bent and his feet were turned under.


(This is as straight as Jais's legs could go)
 

His ankles could do an incredible, flip over, complete circle, bend every which way thing (Which is pretty creepy to watch)...Only because I've never seen ANY feet do what his can do....LOL
 
Jais could also not lay flat on his tummy, because one hip was stuck in a bent position....(Causing him to lay sort of on his side all the time).
 
In July, we learned about Shriner's Hospital of Chicago.  It's an orthopedic hospital.
 
They said they would take Jais's case......
 
They said they would do all that they can to help him.....
 
They said that you never know about these things..... ;-)
 
So......
 
On January 6th, Jais went in for surgery. 
 
They worked for 5 hours on his hip, fronts and backs of both knees and both ankles......
 
Jais was hospitalized for three days and then came home in straight leg casts.....He chose purple :-)
 
 
 
This week, we go back for x-rays, a cast change and measuring for braces.  It is expected that Jais will be in casts for 8 weeks.....
 
The doctor's initial goal is to get Jais able to put his feet flat on the floor... (surgery should help his ankles get to a 90 degree angle so his feet can be flat instead of curled under...)
 
Jais should also be able to wear shoes soon too! 
 
With the correction of his ankles/feet, and the help of braces, the doctors are hopeful that he will be able to bear weight (stand) for transferring in and out of his wheelchair.....
 
********************
 
Jais however.....
 
Has bigger goals... 
 
 
And he put that all in perspective for us yesterday, when he stood up for the first time EVER!!! :-)









Wednesday, January 15, 2014

Imagine.....



Imagine being in a special needs orphanage in Eastern Europe your ENTIRE life. 

One room day after day after day......

After day.

 
 
The same four walls.....

The same children.....

The same food.....

The same smells...

The same sights...

The same routine.....

Day after day after day.
 
 

 
The only thing that changes is the staff....

The workers....

The people you are dependent on to care for you.....

To feed you, to clothe you, to give any affection that you might be lucky enough to receive-

You never know who will be there.  The nice one, the mean one, the loud one, the quiet one, the rough one, the gentle the one, the scary one, the silent one...


***

One day, out of the blue, people come to visit you.
 
 
You don't know why.....

But you are allowed out of the big room and into the coat room or outside.
 
 
 
 
 
The people look different, talk different, smell different-

And it's scary and exciting...

You are not given a choice-

So you visit with them.....
 
 
 
 
 
You hear the workers talking...

Talking about what might happen to you after you leave this place. 
 
 
 They tell you to be nice so the people will like you and take you home. 
 
 
Since you have never gone anywhere before,

you have no idea what they are talking about.....
 
 
 
***
 
 
One day, the people come to take you away from your orphanage...

You are told to go.
 
 
 
 
You ride in a car with the new people.....
 
 
 
 
 
 
And then on a train....

and then on airplanes.....
 
You are scared......

And exhausted.....

And

Completely

Overwhelmed....
 
 
 

 You are assaulted....

 By new sounds, smells, sights, touches, clothes, food....

You are sick to your stomach....

You vomit again and again....

Your head is pounding...You cry and scream.....

Your muscles hurt from so much movement...

You want to get away...

You hit and pinch and bite......

You are terrified....

And helpless.
 
 
 
You miss...
 
The orphanage...

The routine...
 
The same four walls...
 
The same faces...
 
The smells and sounds...

You miss the nannies...

and your body misses the medications.....

 
 
***
 
 
When you arrive...
 
There are many more people.....
 
 
 
Your new family and friends....
 
Are waiting...
 

 
They are happy,
 
but you have no idea why...


 
 
They want to touch you and talk to you....
 
 
 
 

 
And cry on you....
 

 
 
And kiss you and hug you....
 

 
And talk to you with words
you don't understand...

 
 You just want to cry...

 
And go back home....
 
 

And you do....
 
 
Forever...
 
 
(January 2014)