Hebrews 10:23- "Let us hold unswervingly to the hope we profess, for he who promised is faithful."

Wednesday, April 17, 2013


Last week my mom and I drove to Philadelphia with all the kids.......yes, we did.........It was A LONG drive, to say the least, but we made it there.....and home! It was a great trip, we did A LOT.  The kids really enjoyed learning about the history of our country.  We also went to the zoo and saw a mummy museum and a 200 year old prison.
Olivia had three castings while we were there.  
I am beginning to see a difference in her feet.  
They are definitely straighter, still sideways, but you can now feel her heel bone!   

 This is her feet before any treatment......

The next two pics are after her first set of casts.......

These two are after the second set of casts.......

 And these were after the third set.....
Notice how her feet our open, they don't bend in the middle anymore and her toes are pointing down instead of a 90 degree angle!

The doctor seems to be pretty pleased with the results so far.  After her first set he decided she should have the Achille's tendon lengthening surgery sooner rather than later.  I was very happy to hear that, thinking the castings would be over sooner rather than later......Well, later when he was casting her for the 4th time, he said she would need more weekly castings after the surgery and probably another lengthening at the end of the castings.......:-(  So it looks like these casts will be on through out most of the summer. :-(  Hoping she's not too miserable in the heat......
When Dr VB does the surgery on the Achilles, he will also loosen some of the tendons in her hips to hopefully give her a little more movement in her hips.  Because of this we she will have to spend the night in the hospital......AND this will happen on her dear eldest brother's birthday.......May 8th.  Again :-(

Olivia and I will leave in the morning for her last casting until the surgery.  It will be a quick one night trip up and back.  

Here are some more pictures from our trip.

 Our horse and carriage ride around town.
 The historical part of Philadelphia is beautiful!

At the zoo.

 Love this, she was sound asleep!

 These were the casts Chase picked........not surprised....:-)

 Touring the first penitentiary in the world. 
 Easter State Penitentiary

 Al Capone's cell.....Nice huh?

 Independence Hall

This is the actual room (below) that the Decleration of Independence 
and the Constitution were both signed in!

 Where the House of Representatives met.
 Where the Senate met.

 At the Liberty Bell.

Eating lunch at a the City Tavern. Yes, we're as tired as we look, it was a long walk.....

Ice Cream at the famous Franklin's Fountain.

The Museum at The University of Pennsylvania.

This is limestone from Olivia's province, Shandong, from 536 AD.

These casts were chosen by Taylor! Teddy Bears!
The kids were each allowed to pick out her cast colors and stay with her, if they wanted, during the casting, however she screams the entire time.  My mom asked Taylor if he wanted to go back to the waiting room because he HATES to hear her cry....
He said,
 "No, she might need me...."

Reading Terminal market is such a neat place to get any kind of food you could imagine.

The kids plating at the Ronald McDonald House

Of course we had to climb the infamous Rocky steps......

These colors were chosen by Ella!  Pink and Blue!  
Hair done by Olivia!

Monday, April 1, 2013

The plan.....

We got to Philly around 3, rented a car and drove to the Ronald McDonald House which is amazing! (PLEASE, always leave spare change in the donation box when you're at McDonald's, this is an awesome charity!  And as far as the men from Shriner's standing on the road collecting money, PLEASE always give to them as well.  These charities are just AMAZING!) To my surprise the RMDH serves the families dinner. Different groups or families will cook dinner for the families staying there. So we got an awesome southern-like, home style dinner on Easter.:-) 
Before dinner, Olivia was playing in the playroom and a mom asked if she had AMC (arthrogryposis), I said yes and she introduced me to her daughter who also has it. Her daughter is 16 and they adopted her from Ukraine last fall. Her beautiful daughter was 3 days from aging out of her orphanage in which she would have been sent to a hospital where she would have been confined to a bed for the rest of her life. Now she has a family and will one day, soon, walk! This mom also introduced me to two other amazing women who are adopting out of foster care, girls with AMC. Then today at the appointment it was like a big gathering of many families from all over the country, there for their 5th, 10, or 30th visit! EVERYONE said how wonderful this doctor is and how much he has helped their child. Many said they started somewhere else and no other doctor knew what to do with AMC kids, like he does. 

It was SO encouraging to meet these ladies (and a couple of husbands) and hear their stories. They are all so supportive of each other. The kids get to know and encourage each other as well. 

 I, again, am SO thankful God has led us here. Traveling to another state weekly doesn't seem quite as bad, knowing there are so many other family's going through the same thing.......and along with you.

So, the plan.........

For now we are concentrating on her feet. She will get castings, probably weekly, from her feet up to her mid thigh. They said it doesn't matter how long the casts are on, but how many....so we have options of how to do this. We can go up on Thursday, cast Friday, stay through the weekend, cast again Monday and then come back two weeks later and do it all over again. We can cast weekly, or we can go there for 4-5 weeks and cast twice a week. I'd love to do the 4-5 week thing and get it over with, however that's not possible.......So we will probably stick with the weekly castings. Fly up Thursday cast Friday and come home, til the next Thursday. Since next week is spring break, I am strongly considering taking the kids and driving up (yes it's LONG) to stay the week, so we can get 2-3 castings done in one trip...... Depending on how her feet respond will depend on when she will need a tenotomy. This is when they will lengthen the Achilles' tendon. There is a possibility this will have to be done twice, depending on how her feet respond to the castings.
Her knees........

We're not going to worry with her knees until she's four. Dr VB doesn't want to do surgery til she's atleast 4 and he wants to see if straightening her feet, may allow her knees to straighten a little. Obviously they're not going to straighten completely, however the degree of flexion determines the type of surgery. There are two different surgeries he can do to help straighten the knees, one of course is a little more involved than the other. He said she is right on the border, if she is able to straighten her legs just a little more than hopefully she will only need the less extreme surgery. 


 her hips.........

Well, Sunday I was at church explaining to a friend what was going on and out of nowhere I said, please pray we don't get there and find out more is involved than we think (honestly, this is the first time this thought crossed my mind)
 ......then at the airport I had an overwhelming thought that something more was going on....... I guess I've known it all along but ignored it.
It does look like her hips are involved. Not too severe, so I am thankful for that, it could be A LOT worse. They could be dislocated and they're not, they're rotated. Again we will watch and see what happens. He said they are very tight and can't flex back much. Hoping, once again, that straightening the legs will help. He said, when he does the tenotomy on the Achilles, he will probably need to loosen some tendons in her hips as well. If she ends up needing more, than it will be a more extensive surgery, that I will discuss then.
 I know it involves cutting bone, so I'd rather not jump to that conclusion......

All in all, I am ok with this appointment. 
Luckily, because of some amazing moms I've talked with, I was prepared. 
I can't imagine coming here and not being prepared. 
 It is a little overwhelming, 
however it's necessary,
 and she will one day walk. 
This isn't forever, 
we will look back and talk about those few crazy months of traveling back and forth to Philadelphia and know it was well worth it!

Our view on the way to Philly......it was a very bumpy ride.


Eating a yummy cupcake at the Ronald McDonald House.

After her first appointment, needless to say, she was NOT happy......