Walking Spirit

Yes, it's true. We made the decision on Friday that the pain caused by the extra bone growing at the end of my left leg was not going to go away. It's bearable for a while but not enough for me to wear the prostheses for long periods of time. This is preventing me from moving forward. So, it's time to take a step back.

On Monday morning I'll be admitted for surgery at Wishard. The surgery should be at about 11:30 am as long as no emergencies get in the way. On the bright side, I'm no longer considered an emergency! They'll be removing the extra bone only, so I won't be losing any length. The way that it's been described to me, normal bone is like a tree branch while this new growth is more like coral. It's growing off the end, to the inside, and up. Due to the consistency of the bone Dr. Stewart says that she can cut the bone off without bothering my femur. While she's in there she's going to cut the ends off of a couple screws that are apparently too long.

I'll be staying at Wishard Monday night and then on Tuesday morning I'll be going to IU Med where they will irradiate (is that the right word?) the end of my leg. The purpose of this is to stop the cells from multiplying. This should prevent any further growth. It's not guaranteed but what really is anymore? If I haven't mentioned it before there is a chance that the bone could grow back. In fact, the bone could grow anywhere in my body. It's not a result of the amputations, but rather the burn trauma. It occurs with Burn, Spinal, and Brain trauma.

Once I have healed, which may be another 4 to 6 weeks, I'll get another fitting on my left leg and a new socket will be made for my prostheses (sp?). Hopefully then the legs will become more practical for me to wear everyday instead of being a novelty.

It's difficult for me to stay positive right now because of the step back, and because of a rather nasty cold that has crept up on me. But, I have to look at it like this. If I were trying to push a boulder out of my way and it wouldn't move I could waste the rest of my life trying to force it or I could step back, rethink the problem, and find another way around the boulder. With any luck this surgery will make it possible for me to walk most places as opposed to pushing myself around in a wheelchair. I promise, someone will let you know how the surgery goes on Monday. Till then have a great weekend!

Sorry for the delay. Oh, and the Pacers won! Other than that I have some good and bad news to report this week. Well, not bad really, but kinda sketchy. So, we'll start off with the good news.

Yesterday was a busy day that began with a visit to Madeline's (my niece) pre-school. She took me to school to show my legs for show and tell. The kids were great fun. They had some questions but, for the most part, seemed more interested in telling me about themselves. There was one little boy who enjoyed running over and straightening my legs and then running away again. Every time my legs would lower back down he would come back and straighten them again!

After pre-school I had my first therapy session of the week. Renee and Sarah (PT, not sister) have been discussing different ways to torture me. The "special" thing that they had planned for this week was for me to fall. They put out some mats, Sarah obsessed over some pillows, and then they took the crutches away. I started to fall backwards, which was not the plan, and then, after Renee and Sarah helped me recover my balance, I fell forward.

Eventually I am going to fall on my own and it's important to know how to absorb the shock so I don't injure myself. My martial arts training proved to be quite helpful and Renee and Sarah decided it wasn't necessary to make me fall again. However, I then had to figure out how to get back up. This is not an easy task. Unfortunately I did need assistance from my two favorite PT's (that stands for Physical Torture expert). The main reason why I needed assistance is that once again the pain from the bone at the end of my left leg reared it's ugly head.

This brings us to the bad (sketchy) stuff. The pain is not going away. There are moments when it's not as bad but it gets worse the longer I wear the prosthetic. I went to the Prosthetists office today and they made some more adjustments. They seemed to help but it still isn't perfect. What worries me is that, if the pain doesn't go away, more surgery will be necessary. this is extremely disappointing because, other than the pain, I'm getting better at walking each day.

Today I also got a new knee on the right leg. It matches the left and I now have two legs that bend! It's gotten easier to walk and my hopes are high that we'll get the problem on the left worked out so that I can start wearing the prosthetics more often.

I'm sure I'm leaving a lot of stuff out but that's about all that I can think of at the moment. Have a great week! Can't wait to hear what you all have to say.

Just got back from the Pacers game. Feeling a little tired so I'm gonna write more tomorrow. Just to pique your interest, tomorrow I'll let you know what the "special" thing was that Renee and Sarah (PT from the ARC, not my sister) had planned for today's therapy session! If you don't know what I'm talking about, refer back to the previous posts comments. Check back later tomorrow afternoon. Thanks!

Sorry this is late. Today has been a busy day. In fact, it's been a busy week! As I mentioned last week the left leg doesn't feel very good. After working with it over the weekend the pain was steadily increasing. On Saturday I noticed a lot of bruising. On Sunday some of the skin that is grafted onto my left leg had begun to break down.

So, on Monday I went to the Prosthetist's office and they made some adjustments to the socket and the height of the left leg. It's still a little uncomfortable but most of the pain is gone. With the distraction of the pain gone, and Renee's pushing (sometimes literally), I've finally been able to figure out how this new leg works! And, as a direct result, walking is starting to get easier!

So, here's how it works. My right leg, when I'm standing, is locked in a straight position. The left leg has a hydraulic knee which bends with a lot of resistance (which is very helpful when I want to sit down). However, for walking purposes, the hydraulic resistance gets in the way when I'm trying to step forward. It basically causes my toe to drag and I look like I'm walking in molasses. So, there is a particular hip movement that will release the hydraulic pressure and allow my leg to swing forward in a more natural movement. Up until today I was not able to get this motion! Whenever it did happen it was completely unintentional and I couldn't duplicate it.

Today was my first day back in PT (Physical Therapy) since Friday. Also, my first day really working with the leg since the adjustments were made on Monday. (So I took Tuesday off. Renee wasn't happy about it but I think I deserved it!) Renee of course chooses this day to make me perform in front of an audience. Sarah and Liz (the PT and the OT from the ARC) stopped by to watch. (Remember them, without them I wouldn't have made it home for Christmas.) I had stopped by to see Sarah and Liz last Friday but Liz wasn't there. So Liz demanded that I walk for her.

After a couple laps along the parallel bars Renee and I took our weekly walk down the hallway to the OT gym. Normally what happens at this point is we take a break, I drink some water, and a young lady named April gives me a cool damp rag to mop my brow. Then we get up and walk back to the PT gym. This time Renee sent April off on an errand while we took our break. When April returned she had a pair of crutches.

Let me put this in perspective. I've been using a walker with one leg for about three weeks. Last Friday was the first time that I walked with both legs and a walker. And here's Renee with a pair of crutches! Her pushing hasn't failed me yet so I gave it a shot. It certainly wasn't as stable as the walker but once I got moving I was finally able to control the knee movement!

Getting up and sitting down with the crutches are much more difficult than with the walker. In fact, I wasn't able to stand up with the crutches. But, with practice hopefully we will get to that point. Only time will tell.

That's it for now. Before I go, I should also tell you that these last two posts have been from my home. I spent most of last week here and am spending most of this week here as well. Have a great week!

These pictures were taken today. Yesterday I walked about 20 feet or so, back and forth along a set of parallel bars. The left prostheses is not as comfortable as the right but, it does fit. If you remember, I talked a few weeks ago about the extra bone growing at the end of my legs. Well, when I first put on the right leg it was uncomfortable but after about three days my right leg shrank to a point that the prostheses now fits comfortably. We hope that the same will happen with the left.

Today, when I put on the new leg, it was very painful. The pain is caused by the extra bone. Renee encouraged me to give it time and, as I worked with it, the pain lessened. It's still not comfortable, and there still may need to be some adjustments. But, with Renee's help, and my determination, I was able to walk about 200 to 250 feet today.

It is awkward and I have a long way to go before I can truly walk comfortably but yesterday and today were huge steps forward, and sideways, and backwards! I promise not to make you wait a week when events like this happen. After all, I wouldn't be here without all of you. Can't wait to hear your comments on the pictures! Have a great weekend!

Today I walked!

Though I didn't actually say it in my last entry many of you picked up on what my Physiatrist said would be my next goal. "Buns of steel and a six pack." I found it quite humorous that some of you used those exact words in your comments to last weeks entry. By the way, thanks for all of the comments. I didn't mean to imply that I was going to stop writing. But I found it very interesting that many of you check this site daily. Since I only update it once a week (usually) I can only assume that many of you are reading eachothers comments. Please understand that each day I check to see what's new on this site as well. So, thanks again for giving me some excitement this past week!

Getting back to the buns of steel and the six pack, my Physical Therapist, who has started reading the blog, pointed out to me that I have not given her, or any of the others who have helped me, a name. And they certainly deserve that! People that I will mention from time to time are Dr. Sood, the Plastic Surgeon, who oversees the burn unit at Wishard. I see him every couple of months and he is ultimately the one in charge of my case. At least, he was over my case while I was still an inpatient. While I was in the burn unit several nurses took very good care of me. I don't know all of their names but Rebecca, Ashley, Megen, and Brenda stand out in my memory. Rebecca specifically for taking care of me during the nights (which was when my paranoia was the worst), bringing me a Christmas Tree, and visiting me when I was transferred to the rehab unit. Ashley took care of me during the day, bathing me when I couldn't, getting me ready for surgeries, and taking me to the waiting room so that I could look out upon the world I had left.

After I left the burn unit my care in the Acute Rehab Center (ARC) was overseen by Dr. Carbone, the Physiatrist, who immediately cut me off of all the major drugs and the feeding tube. She still monitors my case and is the medical director of the Outpatient Therapy unit where I receive my therapy now. While in the ARC there were many nurses who helped me. I can't remember their names because I did not see them as often as my nurses in the burn unit. This is because the focus there was to get me independent enough to be home. This goal was achieved through the hardwork of Sarah, the Physical Therapist, Liz, the Occupational Therapist, and Miranda, the Recreational Therapist. Through their assistance I was able to return home in just 10 days! Though I no longer see these people regularly they will always be dear to my heart and I look forward to the day I can walk through the doors of both the burn unit and the ARC to thank them all in person.

Now that I am in outpatient rehab my care is overseen by both Dr. Carbone, and Dr. Stewart, the Orthopedist who performed the amputations, monitored the healing of my wrist, and ordered the carpal tunnel surgery. Dr. Sood continues to monitor my progress as well. What makes all of these doctors great is that they see more than just the broken bones and skin grafts. Even though I only see these doctors on a monthly or bi-monthly basis they are completely focused on my needs as a person.

The actual progress however has been achieved through the efforts of the staff at the outpatient therapy unit at Wishard. Elena was my Occupational Therapist who helped me regain the use of my right hand. She achieved this through some very painful exercises and a lot of encouragement. My Physical Therapist, whose name is Renee, says that you can't even tell that my wrist was broken. See Renee, now you have a name and, by the way, your lucky it's your own. I was considering calling you Dalilah!

It is Renee's job to ensure that I get the buns of steel and the six pack. She keeps reminding me that the six pack is not beer and even accused me of having a gut! I'm not entirely sure what she's thinking. After all, I've been either sitting or laying down since October! But, with the aid of tech's like Hot Amy, who religiously cleaned my wounds each week, and April who entertains me with toys while I stand at the parallel bars Renee is gradually helping me acquire the buns of steel and the six pack that I will need to stand and walk.

One of the things that I have learned throughout this process is that you have to listen to these professionals, who want nothing more than to help people like me get their lives back. I've been given a lot of exercises to do that I don't enjoy but I do them because the people I've mentioned above say that I won't be able to walk unless I do them. I go to therapy each week not only because I enjoy it but also because it is helping me. If I didn't have the help of these people, Mike, the Prosthetist who helps me get my "magic legs", wouldn't be meeting with me tomorrow to give me my second leg. Keep your fingers crossed that this one will fit and check back for an update.

Now, I've gone on for far too long, but these people deserved some recognition at last. Thanks for your ideas on future postings. Rest assured that I will use them in the coming weeks. Please keep the ideas and the comments coming. Oh, and I enjoy hearing from the people who I've never met but... Please, let me know you're out there and what questions you have. Take care and have a great week!