Swimming!

I took Trinity swimming over the weekend and we had a blast! I hoped to be able to take her through the week, but both of us got a little too much sun. After the redness goes away we'll be going back. It's really good exercise for her leg.

She doesn't know how to swim yet, but she's determined to learn how. I tried to help her learn how to float and she did really good, but every time I said "You're floating!" she would get too excited and sink. She hasn't quite mastered that yet, but she has mastered jumping into the water. My arms are sore from lifting her out of the pool over and over.

When we go back her favorite person in the entire world will be going with us, Aunt Emily. I have a feeling I'll be sitting on the sidelines when she does, but that's okay because I'll be able to take more pictures :)



It's The Little Things...

A few days ago my hubby and I took Trinity to the bird park in our little town. The plan was to walk the trails and observe the animals and plants we came across (she's working on habitats in science). There are benches along the way and I assumed we'd need small breaks along the way. Typically she gets tired quickly when walking.

Before we hit the trails, she asked if she could swing for a moment. As she climbed up into the swing that sat the highest off the ground, I found myself watching her with awe. Her dad gave her one great big push and walked away. Again I watched as she leaned back as the swing came forward, then leaned forward as the swing went back. She's no stranger to the swing, but normally I end up settling myself in behind her so that I can give her a constant, gentle push to keep her going.

But not today!

Funny thing is, after a while I told her she could swing until it slowed down. It NEVER did! It was so great to see her smiling with confidence (and a little cockiness) as she propelled the swing forward even harder. After a she swung a little longer, I ended up having to stop her so that we could continue with our plans.

She's not a very outdoorsy type of girl so the walk didn't go quite as I had planned, but I was amazed to see how easy the walk ended up being for her. We did sit on the benches some, but only to be quiet and watch (hope) for some animal to come out. By the end of the trip, she was asking to go on another walk, a longer one.

Dad and I were burning up from the heat and convinced her to go to the park for a while instead. Normally I don't take her to the city park. Kids make me nervous. But we took her to the biggest park in town and turned her loose.

She had a blast!

One little incident did arise, but I was so proud of the way she handled it. A little boy followed her around forEVER just staring at her prosthetic. After a while of doing this, he came up to her and said, "I can run faster than you."

These are the types of situations that make me cringe at the thought of other kids.

But she handled better than I expected. She turned to him and said, "Wanna bet? Let's race!"

She didn't win, but she was very close and had a blast! She was proud of herself! And I was so proud of her I thought my heart might burst out of my chest.

Every day she teaches me to be a better, stronger person. I couldn't imagine not having her in  my life. She's a blessing and she's the strongest person I know. She also shows me that it's okay for me to step back and let her take control. It's not always easy, but I'm getting there.



Welcome To Holland...

I've never seen or heard anyone describe my world as well as I've seen today, and I wanted to share.

Welcome to Holland
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

I Am Not Alone...

Sometimes it's easy for me to forget that I'm not alone.

I just discovered "Google Blog Search" and decided to plunder through a couple blogs relating to Trinity's condition...

I'm constantly looking for ways to educate myself on what's coming. I know that we have a big journey ahead of us and I'm not going to lie, I'm terrified.

The first blog I found is about a boy named Daniel. He's going through the exact same surgery that is coming up for Trinity. Finding real life stories such as this are valuable to me, but not always easy to read. I had to stop reading due to the sick feeling in my stomach.

I'm terrified I'm not going to be able to do all the things I will need to do for her when the time comes. My days will be cram packed with doctors, therapist, exercises and Trinity. It's not that there is too much to do. I'm just afraid I'm going to screw something up. The last thing I want to do is cause her more pain than she is going to and has already endured.

I'm not a doctor.

I've already encountered situations that have been more than a little intimidating, but to me, this surgery coming up is the giant one-eyed cyclopse. I'm not sure that I'm completely ready to face it yet.

I know that I will have my husband with me for 18 days during and after surgery. He's also planning on coming up as many weekends as possible after he has to go back home. I also know that I have many friends and family members that are willing to and planning to come up, but...

I'm still scared.

I'm scared of the pain Trinity will go through. I'm scared of the infections she will be at risk of. I'm scared of her joints locking up or fusing together. I'm scared of not being strong enough. I'm scared I'll forget something that will hurt her. I'm scared I'll oversleep and miss something I shouldn't. I'm scared of making the wrong choice. I'm scared I won't know what to do.

I'm scared of all the things that could go wrong.

I'm scared of failing her...

Yard Sale Success!

I don't have any pictures from the yard sale as I had planned, yet. We will be having at least one more, possibly more. Every morning when I get up to go I seem to forget my camera...

I wanted to thank everyone that helped us get this together. So many of our family and friends have made this a success! I also want to thank the kindness of complete strangers! I'm amazed at how caring and concerned everyone has been. This could not have worked without every single person that has contributed! Whether you donated stuff to sell, money, prayers, your time, or even if you just spread the word for us, every bit of it has gotten us this far! We couldn't have done this without EVERYONE!

When the idea of a fundraising yard sale was born, I never expected it to work out so well. Our goal was $1000 for the co-pay we have to pay on the day of surgery. Over the course of two days, we raised $1500!! This amount was a mix between sales and donations.

We plan to do another yard sale soon. We are very hopeful that we can raise enough to cover the majority of the trip. We're estimating our cost to be between $3000 to $4000. We've already raised a large chunk of that.

We are blessed to have the support and help that we have been given. It has been a very humbling experience and one that I will never forget.

The past couple of weeks have been different for our family. Both my husband and I have tried to keep our burdens just that, our burdens, but there are times when issues popped up that were too great for us to handle alone. We've always had help along the way, but for the most part we've tried to carry the weight of our situation alone.

Because of this...

I cannot express the appreciation we feel for everyone! I love each of you!

Super Ankle Surgery & Scar Revision February 2010...



In February 2010, Trinity had super ankle surgery as well as scar revision on her hip and knee. In the picture above you can see the length difference very well. You can also see how her foot kicks out to the side. Because of the scar revision she was put back into a Spica cast (oh the joy). I was very excited about the scar revision.

The red patch midways down her leg and over the bend between her foot and ankle are caused by the straps on the prosthetic.

You can see in the picture above that her ankle no longer kicks out to the side. Before the surgery she was unable to stand flat on her foot. Her toes always pointed down (ballerina position). If you were able to see the size of her scar in a previous post you can see that the scar revision helped a lot. She still developed Keloids, but they're not nearly as bad as they were. A plastic surgeon is in the plans for the future but only after we are done with everything else.

Although everything went well with the surgery, we had a similar problem with her ankle healing like her knee. Only this time I got to see it when we went for the cast removal. It was extremely frightening. The skin along the edges of the incision had died instead of healing and turned black. It left a hole about the size of a nickle where the skin had died. Dr. Standard cleaned it up and closed it back up. We were sent back home with the Spica cast for another six weeks.

This is what her incision on her ankle looks like now. It's very heartbreaking, but I know that it won't be like this forever. Dr. Standard has assured us that a plastic surgeon can make it look like a normal scar

.

Spica Cast Removal ~ March 17, 2009!

I don't have any good pictures of Trinity in her spica cast but the image above shows what it was like. Hers was more like the one on the right without the bar and the piece down on the left (right for her) leg. Her cast went all the way down the left leg and around the waist. 



We were scheduled to have her spica cast removed on March 17th. I was very excited to be rid of that thing. Anyone that has had a child in a spica cast knows exactly why I felt that way...

It's virtually impossible to keep them from getting urine inside the cast!! When that does happen, you have to sit with a hair dryer on the cool setting forEVER! If you do not get it dry, the moisture trapped inside will cause the skin to blister.

So...we left for Baltimore and I could not wait to get our lives back to normal. I remember packing pairs of socks, a pair of shoes and undies (no more diapers!). For over a month it had been one sock, one shoe and diapers and didn't figure I would need them after the spica cast was gone. I was so wrong...

When they pulled her cast away from her leg the skin over her knee began to bleed. Of course, she was looking and saw the blood trickle over the side of her leg onto the white bed sheet. My reaction time to comfort her was slightly delayed. I won't lie, my heart stopped and I thought I might passout when I saw it myself. Dr. Standard assured me over and over that everything was alright. I tried to listen to him, comfort her and control myself as best as I could. I had a hard time concentrating on what they were saying, especially when they were moving her leg around.

He said that sometimes the knee is difficult to get to heal up right. In Trinity's case, when we went for the cast change at two weeks there had been problems with the knee healing badly. He said that when he scraped the knee to get it to heal up right, the fresh blood caused it to stick to the material inside the cast. When they removed the cast it pulled away the scab that should have been on there and left behind the soft pinkish tissue under the surface.

On top of the knee wound, her scars weren't what I had been expecting. On her hip and knee the scar was very thick and raised. He called them Keloid scars. Before that day I had never seen one and like I tend to do, I thought it was something I had done. After doing some research online I learned that people do in fact develop these types of scars due to a certain skin type.

Trinity and her cousin Savannah. Not the greatest picture but you can see her knee scar in the bottom right.

Aside from the scars and the knee problem everything else was great. Because of the knee we had to take the spica cast back home for six more weeks. They did make it removable so that I could tend to the knee and bath her. Before her surgery her range of motion was very restricted. After the surgery it moved like a typical leg, but it seemed very unnatural for her. It took a little getting used to.

Before we left he showed me how to care for the wound. He sent us home with gooey bandages that wouldn't stick to her and plenty of gauze. She had to take antibiotics for 10 days and we had to change the dressing on her knee daily.

I'm sure he did a very thorough job of explaining all of this to me, but Brandon (my husband) ended up having to tell me over and over on the way home. Luckily, Vada, our neighbor at the time was a nurse and she came over to watch me and make sure that I was doing it right. I thank my lucky stars she was there.

When I learned that I was pregnant I was excited. I looked forward to being a Mommy. I knew being a "nurse" came with the Mommy position and I couldn't wait to kiss the boo boo's. I wasn't prepared for kissing this knee boo boo. It was intimidating and I was terrified I would do something wrong.

Since I don't have any good pictures from the time I'm talking about, here's one of my little Trio just because they're so dang cute. Trinity, Savannah & Austin (her cousins)!

Two Week Check Up & Cast Change 2009...

Note ~ I had pictures from this trip but two of my memory cards were damaged before I could get them on my computer :(

After two weeks we had to go back to Baltimore for a check up and cast change. Although she wasn't having surgery, the appointment was scheduled as such because they put their kids to sleep when changing the cast. It creates less stress for them plus makes it easier to get them back into the new one in the right position.

After she was finished and before we could go back to see her, Dr. Standard came out to give us an update. He said that everything looked great but her knee wasn't healing like it should. I didn't understand what he was saying at the time. All that mattered was that he had made it better and everything would be fine.

We were taken back to recovery and were allowed to leave after a few hours. This time she had picked out a very pretty neon pink cast. We headed back home with plans of returning in six weeks.

I love this picture. It's from her first surgery.

Super Hip & Knee Surgery February 2009...

Trinity had her first surgery in February 2009. Everyone was anxious, Trinity especially. As we waited in the back I found myself struggling to reign in my emotions. I didn't want to appear scared or worried in front of her, but the longer we waited, the more upset she became, the more stressed I was. On several occasions I considered walking out with her and just running back home. I wasn't sure I was going to be able to handle myself when they finally came to take her back into the operating room.

Thankfully one of the nurses brought this amazing stuff known as Happy Juice...

After the Happy Juice kicked in it was a lot easier. In fact, it was impossible not to laugh and smile. She was like a wee little drunk person. She wobbled all over and rambled about anything and everything with slurred speech. After the happy juice they asked her to pick out the color/design for her cast. She picked the American flag design...

Her surgery took almost 8 hours but everything went very well. Those 8 hours were quite possibly the longest eight hours of my life. We were updated on her every hour, but it still didn't seem like it was enough. I wanted to be able to know what was going on with her every second. When they finally came out to get us when she was in recovery I practically ran to her.

It took her a few days to get back on track. She hadn't needed a blood transfusion during surgery but they ended up having to give her one afterward. Her blood count was staying really low and she had very little energy and almost no desire to eat. After the transfusion she came around fairly quickly.

We were sent home after about a week. My mother had straightened up our home while we were away and set up a nice little welcome home gift for her. We were all very happy to be home.

Here's a little video that was taken right before she went into surgery. I love it. Bless her little heart.



Meet Trinity...

This is Trinity, my very energetic seven year old daughter. She was born six weeks early weighing 2lbs. 3oz. with a rare birth defect known as P.F.F.D. or Proximal Femoral Focal Deficiency. Some of you may know what this is, but if you find yourself thinking copy --> paste --> Google, don't feel bad because I was in the same boat the first time I heard these words.

P.F.F.D. basically means she was born with a short leg. The femur bone in her left leg is less than half the length of the one in her right leg. You can go HERE to read more in depth on this. Along with P.F.F.D. she was also born with Fibular Hemimelia. The Fibula in her left leg never developed at all.

As you can see in the photo above, the femur in her left leg has a significant difference in length. You can also see that the missing fibula causes her ankle to kick out without its support.

During her 32 day stay in NICU at the Children's Hospital in Kentucky due to her size, none of the doctors could explain why she was born this way. No one seemed to know anything. All they could tell us was that it wasn't gentetic and that it wasn't anything I had done. By the time she left NICU we had an appointment at Shriner's to meet with a team of doctors to discuss our options. I really had no idea what to expect but I can say that the options we were given had never crossed my mind.

1. Amputation from the hip down.

2. Van Ness Rotation.

We were given these two options because she did not appear to have a hip joint or a kneecap. They didn't expect us to make a decision right away but advised us to do so before her first Christmas. As we were leaving Shriner's I thought I would breakdown right there in the parking lot. How could I cut off my precious little girls leg? And the Van Ness Rotation...well...I couldn't even think of that as an option.

The Van Ness Rotation is where they remove the femur completely and move the lower part of the leg up and turn it backwards. The ankle is supposed to act as a knee. A prosthetic is worn to make up the rest of the length difference.

Thinking there were no other options I attempted to discuss our options with my husband on the way home that day. As soon as I began he stopped me. He refused to believe that this was our only choice. He planned on searching the Internet for more information and seeking out a second opinion, a third, and forth...

He found five hospitals across the US that he wanted to visit. The first of the five was the Children's Hospital in Ohio. I tried not to get my hopes up as we headed off for that first appointment. When the doctor finally come into the room after examining the x-rays I expected to hear the same thing we heard at Shriner's. Much to my surprise, I was wrong.

The doctor agreed that Trinity's length was severe and that there didn't appear to be a hip joint or a kneecap, BUT she did notice that there was a small gap between the top of her femur and where her hip joint should have been. She wanted to wait a few months to see if there might be something there that just needed a little more time to calcify.

After six months we returned for more x-rays. When the doctor came in with a beautiful smile I could hardly contain my excitement. She brought up the x-rays on her computer and showed us a tiny white area where her hip joint should be.

"I do believe that is a hip joint." She had said.

She hadn't wanted to get our hopes up but she told us that if she was right, lengthening might be an option for her. She did stress the word might. Even with a hip joint there was still the possibility that we couldn't lengthen. There are for classes for P.F.F.D. with D being the worst. Trinity was classified as a C, meaning lengthening could be possible but unlikely in most cases.

For almost two years we traveled back and forth for x-rays. Each visit building my hope up just a little higher. Everything was going well. She did have a hip joint as well as a knee cap, both just needed more time to calcify so that they could be picked up on x-rays. To make up the difference in length during this time she wore an AFO prosthesis with a pipe and prosthetic foot off the bottom.

Then...Her doctor transferred to a hospital in Utah and we were to start seeing her partner. We were sad to see her go but we were still hopeful and willing to work with her team member. As we waited for the day we were to meet her new doctor we found ourselves back at Shriner's. I'd made an appointment to get a prosthetic made there. After we arrived for the appointment we were informed that we could not come there for a prosthetic without meeting with the doctors. We agreed to an evaluation so that would could get the prosthetic. The evaluation turned out to be a nightmare.

After taking x-rays, four doctors came to our room. I'm not sure of the purpose of three of those doctors since they simply stood in the background without a single word as the other doctor proceeded to tell us that we were making a bad decision. He told us we were ruining her quality of life and that our efforts to save her leg were a waste. I tried to bring to light the fact that they wanted to amputate her leg based on the fact that she had no hip joint or kneecap and if we had allowed them, we would have never known they had been wrong. He refused to listen to me and was firm in his belief that we were making the wrong choice. After I informed him that we already seeing doctors in Ohio he let us know that he was good friends with the doctor we were being switched to and would contact him.

After our visit with the doctor at Shriner's I was a little anxious about meeting with her new doctor and what he might say, and I was right to be. He was very short with us and he made very little eye contact as he was speaking with us. He told us that her other doctor had only been getting our hopes up and that there was nothing that could be done to save her leg. He asked to see her walk on her prosthetic and barely gave her time to stand after putting it on before he walked off.

Everyone of us were angry and devastated. Shortly after he left the room the nurse suggested we meet with the entire team of doctors for an evaluation. We agreed but were not so eager to return. As we waited for the evaluation day to arrive we made the decision to seek out a different doctor no matter what they had to say.

The evaluation was short and we were informed that we would not know their conclusions for about 6 to 8 weeks. Even when the report came in the mail stating that Trinity was in fact a candidate for lengthening, we were firm on our decision to seek out a new doctor after the way we had been treated.

For a while our search for somewhere different was relentless, but after a few months it began to fade. By this time she was getting older and we both knew that if amputation was going to be our only option we needed to make a decision soon. We both wanted the transition for her to be as easy as possible.

Then...

I found Lexxi's mommy on MySpace. After browsing through images online I stumbled across a baby girl with the same leg condition as Trinity. I sent a message and waited for a reply. It didn't take long and her mother was more than happy to talk with me. For several days we exchanged messages. Her daughter had already begun the process of lengthening and she shared with me her doctors name and where he was located.

Armed with fresh excitement and new hope I made an appointment. In November of 2008 we met with Dr. Standard in Baltimore Maryland at the Rubin Institute. I was extremely nervous. Before we left we had decided that if amputation was our option again, we would go ahead with it before she got any older. To be quite honest, I expected that to be his response.

So...when he came into the room after examining her x-rays and said, "We can fix this." I nearly leaped out of my chair to kiss him. He also told us that if we had come to him in the beginning he would have told us the same thing the doctors at Shriner's did. Without a hip joint or a kneecap lengthening just doesn't work. Waiting, in Trinity's case, had actually been a blessing in disguise.

The funny thing is...

I feel like we were given signs throughout our journey that brought us to Baltimore. A lady in the waiting room in Shriner's had told us about a relative that was seeing specialist in Baltimore. Our neighbors told us of a long time friend that was taking her son to a specialist at the Rubin Institute in Maryland. When I searched online I often come across the name Dr. Paley, who happened to work with children like Trinity in Baltimore.