Wednesday, July 28, 2010

strange things being said

It is only 9:00 AM and already strange conversations are occurring in our house~

"Please don't play with your brothers leg"
"I don't care if he isn't wearing it- it is not a toy!"

"my leg makes me too slow- I NO like it!" guess who said that one.

"it squeezes me too tight"- need to address this one with PT guy.

"you only have to wear your leg for a little bit after lunch today"
(thinking to myself- we are going food shopping really soon and there is no way you will be able to get in the little car attached to the shopping cart with your leg on)

Amanda- "What are you going to name your leg?" Who names a leg???

New rules-
1. You don't play with your brothers leg
2. The leg is not a weapon - (no matter what Pastor Joe said about letting boys play with weapons)
3. If you wear your leg after lunch even for a little while- I will give you whatever you want- OK- just thinking this one in my head.

It is going to be a fun day! Off to pet club at the library, then food shopping with all 5 kids and then home to practice wearing the leg. Ok- maybe it does need a name.

Tuesday, July 27, 2010

the real work begins

Today we spent part of our day at Shriners. We met with our friend Mr. Rueben, who is the gentleman who built Jonathan's leg. He had Jonathan try the leg on and make sure everything was perfect. We then had a lunch break and then the work began. We met with Ryan who will be our physical therapist. We will get to know him well as we will be working with him about 3 times a week for the next few weeks.

Honestly, I think Jonathan is happy with his leg, but he is not sure he wants to use it. Bottom line- the leg slows him down. He has to go slow, think about what he is doing and be very intentional with each step he takes. Not fun for a very active 4 year old. At one point today he wanted to be carried and so I lifted him and the leg and noticed a big difference in his weight. So I weighed the leg. It weighs about 4 pounds. That is a lot of extra weight to lug around when you barely weigh 30 pds.

I have no doubts that in time Jonathan will be walking and running with the prosthetic leg. We just have to get him to see it as a good thing and not a hindrance. When we got home today, he got down to push his big dump truck and I heard him say, "trouble, mom" he just couldn't get situated right to play with his truck- the leg was in the way. Off came the leg!

At the recommendation of Ryan, we will be putting the leg on him initially for about 2 hours a day and working up from there. We have some "exercises" to assist Jonathan to gain his new center of balance.

The work is now beginning. Our goal is to get him walking without any aids. When he achieves this goal they will unlock his knee giving him even greater mobility. His prosthetic knee is currently in a locked position for his safety.

On our way home today, Jordan had the brilliant idea that we should go out for Chinese food to celebrate Jonathan getting his leg. It was hot, I was tired, we never did go out to celebrate our wedding anniversary. So, we enjoyed a wonderful Chinese dinner out in honor of Jonathan getting his leg!

Monday, July 26, 2010

The party(ies) over!

Yesterday, we celebrated Jonathan's Birthday one more time! This time we celebrated with family and some more friends.

Amanda made and decorated Jonathan's cake.

Too much celebrating!

I took this picture on a day when Amanda wasn't home.

Emma knew she was missing and waited by the

door on the shoe bin until she arrived home.

Tomorrow we go to Shriner's for another fitting and to begin physical therapy using the prosthetic leg. We are not sure if we will be bringing the leg home or not as there are safety issues until they are sure Jonathan is competent using it. Please pray that he adapts easily to the use of the leg and is safe when using it.

Tuesday, July 20, 2010

Pool Side Party

As I type, the 3 youngest boys are having a blast in the bathtub that I filled with ice. It is the little things like ice in the bathtub on a hot night that make life fun.

This was the picture last year for Jonathan's 3rd birthday. If you remember, some very wonderful friends had a birthday party for Jonathan last year. It was a bittersweet party as the guest of honor was not present, but hopeful that we would be meeting him in the near future.

Today, we celebrated Jonathan's fourth birthday with these wonderful friends. We once again had a pool side party. The difference this year ~ the guest of honor was present!

What a difference a year makes!

Sunday, July 18, 2010

A Week at the Beach

Breaking News: Our health insurance reversed its decision and will be paying for Jonathan's prosthetic! Praying God for this huge answer to prayer.
We returned home yesterday from a week at the beach. I will let the pictures tell you the story of our week!

Jeremy and Amanda getting ready to fly a kite

We had the privilege of celebrating Jonathan's 4th birthday while at the beach. We are so thankful that he was here with us this year. His first birthday as Jonathan Futing Shafer, his first birthday with us and his first trip to the beach. A great way to celebrate!

Mom-mom and Pop-pop and Cousin Andrew joined us for part of the week

Jonathan loved playing with his trucks on the beach.

Jordan catching a wave!


Cape May, 2010

First surfing experience
Daddy and Jonathan

Ben buried in sand

taking a nap in the sand

I LOVE the beach!

too much beach...

Thursday, July 8, 2010

Leg in progress

This afternoon we took Jonathan to a fitting for his prosthetic leg. As the doctor was fitting the prosthetic on to him you could tell this was a proud moment for Jonathan. He was able to stand on his own 2 feet and have his hands free!

Jonathan was able to walk holding on to the bars using his new leg!

Learning to walk is hard work!

We will get a call in about 2-3 weeks and then we'll go again for (what should be) the final fitting. If all goes well we will come home with a leg at that time and begin physical therapy.

At the end of our appointment, we had an unpleasant surprise. We were informed that our health insurance denied the claim to cover the cost of Jonathan's prosthetic. Apparently, our health insurance does not think a prosthetic leg is "medically necessary." Now, Shiner's Hospital is a charitable organization and the way Shriners works is that we will never get a bill from them. But, they will submit claims to our insurance as needed and they will pay whatever is not covered by our insurance. In this case, they will still go forward with the prosthetic at no cost to us, but they did ask that we appeal to our insurance company to cover the prosthetic. We have started the appeal process and our appeal will go before the appeal board of our health insurance for review. Please pray that they reconsider and pay for Jonathan's prosthetic.

I mean, it is great that Shriners will absorb this cost for us. But many Shriners patients are under insured or uninsured... and it seems wrong for this reasonable claim to be denied.

I understand that Jonathan can live a happy, healthy life with one leg, but where is the compassion here? He needs and wants a leg! We are going to fight this because we do not think it is right that the claim was denied. Also, if we're not successful with our appeal, we will be limited to where Jonathan can get physical therapy because that too will not be paid for by our insurance. There is a ripple effect to this first denial!

It's tempting to respond in anger and push "hot" buttons. Health insurance is a politicized hot topic if ever there was one! But, we're going to play it cool for now. We hope our insurance company comes to its senses. Ultimately, we believe God is in control and that in the end Jonathan will have what he needs.

Tuesday, July 6, 2010


I started this post on Saturday. I am finally getting around to posting it today. We received a phone call today from Shriner's Hospital requesting that we bring Jonathan in for his next prosthetic fitting. We will be going down there on Thursday afternoon to meet with the prosthetist. We will not be getting the prosthetic this Thursday, this appointment is only to fit it and make sure they are on the right track in making the leg.


Today Jonathan was hoping down the hallway on his one leg. He yelled, “Look at me!” I expressed my astonishment at his wonderful hoping ability and then I asked him, “Where is your other leg?”

Without missing a beat he replied, “In China!”

I said, “Where in China?”

Jonathan answered, “It's hiding”.

I asked, “Would you like the doctor to make you a leg that would go right here?”

He answered, “No, because I don't want one”. A few minutes later, I was helping Jonathan put on a Buzz Light year costume.

He asked, “This have 2 legs?”

I answered, “Yes”.

He asked, “Why I only have one leg?”

Caught a little off guard, I said, “Because God made you very special”.
And then I thought that if he had 2 legs, he would not be part of our family, he would not be my son. I (of course) would not wish a “disability” on anyone, but the fact is that if Jonathan had been born with 2 legs he would most likely not have been abandoned. I can only assume that Jonathan was abandon because he was missing a leg. I'll never know for sure. I was not there. I have not talked with his birth family so I am making an assumption. Regardless of the exact reason why Jonathan was abandoned, he was abandoned because someone didn't think they could take care of him. I can't imagine my life without Jonathan. He has added so much to our family. He is part of our family. He is my son. He is a brother to Amanda, Tyler, Jordan, and Ben.

In the next few weeks, Jonathan's life is about to change. He will be given a prosthetic leg. I wonder what will he think of this contraption? Will he accept it? Will he take it off and hide it? Does he even want a leg? My guess is that he will embrace this new challenge with a positive attitude. I am thinking there will be good and bad days in his attempts to use his new leg. I am certain that, with time, he will conquer the challenge of learning to use it.

While in China, one of our driver's asked if Jonathan would receive a prosthetic leg in America. Jeremy replied that we were working with a wonderful hospital that would help us evaluate his options. Jeremy asked the driver if anything would be done to help Jonathan if he stayed in China. The reply was that, most likely, nothing would be done until he was much older. I believe the driver, along with the majority of people in China, was saddened by these limited options. Yet individuals like him are not in a position to help the disadvantaged; the little ones. I believe this driver saw Jonathan's being adopted as the best way for him to have a better life; a life that he hoped would include a prosthetic leg.

So, I am reminded this July 4th weekend to be thankful for the freedoms that we so often take for granted. I am thankful that in America we value children, individual rights, independence and differences. I am thankful that we are not told how many children can be part of our family. I am thankful that we have the freedom to home-school. I am thankful that we have the freedom to go to church and worship God. As we live our daily lives, it is so easy to forget all the freedoms we have just because we live in America.

I am also so thankful that Jonathan is part of my family. I am thankful that he will be given the opportunity to have a prosthetic leg. I recognize that his disability made it possible for him to become part of our family. I wish there were some way we could communicate with his China Mama and Baba and let them know that their little boy is happy. He is getting a leg. He is growing. He is thriving. He is healthy. He is part of a family that loves him very much.