Lengthening #2

I never did finish updating like I had planned, but we're coming up on lengthening #2 and I hope to do a much better job this time. Not everyone knew this, but during our stay for the previous lengthening I ended up having a miscarriage. Between that and trying to do all that was needed for Trinity I think I was barely functioning. Then after I came home I was finally able to grieve and mourn our loss.

We leave for her second surgery on March 23rd and she has surgery on the 25th. I've already started trying to get things ready and during the process I found the bag that I had placed all over her spare hardware and tools in. There's a strut, a wrench, the turning rod, and two knee bars. For whatever reason I couldn't get rid of these. I think I'm going to hang on to them for her to have if she wants.

I'll be so glad when we finally do get up there. We were originally supposed to go up there in mid January, but we never made it because she ended up getting sick. We rescheduled for the middle of February and never made it then either because of another illness. We're 13 days away from leaving for her third surgery date and we're doing our best to keep her well. We had to miss two very important birthdays and she has some last minute appointments at the crack of dawn to try to beat people into the doctor offices.

I can't even begin to describe the stress that we endure in the time leading up to surgery. Both Dad and I agree that it doesn't get easier until we're settled in Maryland and he's back home. The thought of separating and the process of separation is hard. The other day we were in the car and I began to feel a familiar tightening in my chest and it became difficult to breathe when I thought about leaving for Maryland and surgery. I mentioned it to Dad and how crazy it was that I could actually feel it in my chest and he responded with, "No, it's not crazy. It's anxiety, and I feel it too."

I'm not sure how I didn't realize that what I was feeling was anxiety??

Trinity seems ready to get on with this next surgery. She's excited to be going back to Baltimore and the Ronald McDonald House. We're hoping we'll get to see some of the friends we made up there during her first lengthening stay. We'll also be up there during the spring and summer so we're hoping to get out an do a little exploring while we're there.

13 days and counting...

Long Overdue Update

Window seat :) 

Been a while since I've updated, again. Over the next few days my goal is to give a good update over everything from the last almost two years! I'm going to break it down into different posts.

Waiting for Dr. S

Trinity's first lengthening was supposed to happen in 2011 but we didn't make it until 2012. We had to reschedule twice because of her becoming sick just days before surgery. We finally made it January 17, 2012. 

They gave her Happy Juice

It makes her happy

Getting ready to go back

When she was first put into her room after surgery and she started to really wake up from anesthesia, both me and dad had second thoughts about our decision. The fixator was terrifying and she acted as if she were in horrific pain. I was so scared and full of regret as I tried to comfort her. Normally after a surgery she bounces right back. This one, however, her anxiety levels were through the roof. 

After we finally left recovery

Not a happy girl :(

Doctor after doctor and nurse after nurse came in to check on her, like usual. It usually isn't a problem, but this time she had a huge chunk of metal attached to her leg that they wanted to see and she didn't. She didn't want them to lift her blankets or touch her toes. She didn't want them to do anything. I'm no stranger for feeling like a horrible parent because of the path we chose for our daughter, but this was a new low. I felt like a monster for doing this to her. What had I been thinking??

Breathing exercises

This went on for the rest of the day while she was awake. It was a nightmare. The next day, however, was a different story... 

All this with no Happy Juice

Other than being tired and slightly zombified from the meds, my sweet Trinity returned. She began talking to the nurses and even asked them to show her the fixator. It was wrapped in a beige colored cloth and they had to lift it up so she could see. She shrugged and said, "Hm, cool."

Femur Fixator

My little zombie

Earth to Trinity...

I think that's when I finally started to breathe again. Now, I'm not saying everything was all hunky-dory and easy going from there. It was still hard at times, but my Trinity was back. 

First time out of the bed 

Had to walk down the hall and back before we could be released

Having Lunch while we wait on the shuttle

 
Her baby was hungry and thirsty, too

Yummy! Grilled Cheese :)
Dr. S told her to eat all the cheese she wanted!

Three days later we were on our way to the Ronald McDonald House, our home for the next 3 months. She was SO excited to ride on the shuttle. The day we left that was all she could talk about. The shuttle drivers name is Gary, and she absolutely adored him. They became instant buddies. We barely had introduced ourselves before she stretched out her arms to give him a hug.

Gary giving Trinity a lift onto the shuttle

First shuttle ride to the Ronald McDonald House

Dad stayed with us the first week we were at the house. He made adjusting to a fixator and walker in a new home so much easier. It didn't take long for us to settle in, and it took even less time for Trinity to decide she never wanted to leave the RMH.

I Was Abducted By Aliens...

Well, not really, but I have been slacking on updates about Trinity. So here's a quick overview of what's been going on...

Since Trinity is looking at six months with a fixator on her leg, we decided we wanted to do something fun with her. And since some of our favorite people moved down to Florida and we hadn't seen them in a while, the decision of where to go and what to do was fairly easy. So, we spent the 4th of July in Florida with some very missed family! We watched fireworks over the ocean and I can't even describe how awesomely amazing it was! She had a great time and had a blast playing with her cousin :)

Fast forward one month and we're back home preparing to leave. Then, at the very last possible minute, a cold strikes! When I say last minute, I mean the day we were supposed to start packing and leave. We had no idea what we should do since there was no way we could contact anyone on a Sunday. We spent the entire day trying to figure out what to do and knowing that the odds of us getting there and them sending us home were pretty high, we decided to stay home and call first thing Monday morning. It's a good thing because they wouldn't have done the surgery. Her surgery was rescheduled for the end of September, and once again, right at the very last possible minute, she began running a fever and BAM! Another cold...

It was very frustrating. We tried so hard to keep her from getting sick. It's beginning to seem like an impossible thing. Anywho, since we had to reschedule again I asked them to schedule it for after her birthday in January. Now it's January 12th and we have 3 days until we leave. We've worked even harder to keep her from getting sick. If she gets sick at the last minute I might just have to look into getting her a plastic bubble...for real...

I really hope we can make it to this surgery. I don't want it to be put off any longer than it already has been.

While we were in Florida, we got to share in a pretty amazing discovery. The day we arrived my cousin found out she was pregnant! It was pretty awesome to share the moment with them and to see their son react to the news. I cried, she cried, we all cried!

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...