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. 

And.......

 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.

Philadelphia

Eating a yummy cupcake at the Ronald McDonald House.

 

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