AMPUTEE AWARENESS MONTH!

My Hickey Leg

I have come to the conclusion that I am a lazy when it comes to dealing with my prosthetics. I like to step into my leg and not have to think about it for the rest of the day. I accept that I have to wear a liner, but if I could eliminate that step, I would!

I was thrilled when I switched to the seal-in liner. I hated wearing the sleeve. My shapely (code for chubby) thighs aren't conducive to holding silicone in place.

I struggled for my first year as an amputee with the sleeve that kept rolling down, bunching behind my knee or ripping in pieces. I was forced to limit my wardrobe to shorts and dresses because I needed constant access to my leg to adjust the "blasted sleeve." I guess I complained enough because when the seal-in liner became available, I was called into my prosthetist's office to give it a try.

Technically, I am supposed to release the valve in order to remove my prosthetic. I have become accustomed to skipping that step altogether. I have been able to remove my leg by stepping on the prosthetic foot with my intact foot and pulling up. I was thrilled with this "short cut" because I was able to save even more time.

Apparently my short cut has been the root of my stump issues. Being able to remove the prosthetic without releasing the valve is an indication that constant suction has not been attained. With each step I have been pistoning up and down within my socket, creating something akin to a giant hickey on the bottom of my limb.

I have now been sentenced to a week using socks over my liner. I detest socks. I find them cumbersome and, quite honestly, I simply resent the extra step. I know that sounds silly, but it is true.

We suspect that I am going to need a new socket. I have been in this socket for so long that I didn't realize my limb has shrunk. I know that the bruising on my limb is not healthy and is compromising my circulation. It definitely needs to be remedied.

Of course, I'm sure that Elsie (my insurance adjuster) will ignore my request for new sockets (my running leg will need to be fixed as well) and I fully expect to be addressing this issue until next winter. Dealing with the insurance company may be the only thing I resent more than wearing socks!

On a separate note, Happy April Fool's Day! Scott and I have vowed to not engage in any practical jokes. Robby, however, has fully embraced the holiday. His plan? He wants to ice a sponge and decorate it with sprinkles. He plans on giving it to his Daddy as a sponge cake. (I think he saw the idea on tv.) In any case, he apparently finds his joke hilarious because he breaks into peels of giggles every time we discuss his plan. Have fun!

The 'K' Word

Yesterday I spent the entire day cleaning and organizing. I went through all of Robby's toys, sorting out the ones that he has outgrown and making access to his favorites easier. After six hours, my house was organized and clean. I also ended up with three large boxes full of baby and toddler toys to sell on Craigslist.

Sitting down and needing a break, I called my Mom to say hi. I'm sure she didn't realize that I was staring at the boxes full of treasured toys that have been outgrown by my little boy when I called. If she had known that I was feeling sad about Robby growing up I'm sure that she wouldn't have broached the topic. She didn't know-- which is why she brought up "the k word."

It is common knowledge with many of my friends and family that I cannot talk about kindergarten without breaking into tears. My neighbors inquire about Robby going to school and I simply melt into a puddle. Tears form in my eyes and I can't speak because of the lump in my throat. I broke down in my prosthetist's office earlier this week when he inquired about Robby going to school. I am not dealing with this gracefully!

I look at the calendar and feel pangs of grief with each passing day. Some nights I feel like crying because every day that ends is simply another day closer to the beginning of September. (Of course, some nights I'm so exhausted from dealing with Robby Rotten that school doesn't seem like such a bad idea!)

I know it sounds foolish; I realize that I should want him to grow up and go to school. I may be selfish, but I don't want him to go. I like having him home.

Just thinking about his going to school, sitting at his little desk and eating lunch with somebody other than me and I find myself fighting back tears. He can't be ready for school yet. It feels like I just brought him home from the hospital! Yet, I have boxes full of outgrown toys and a calendar moving quickly towards "the k word."

Part of me just wants to take Robby and run away. I want to hide somewhere where he will always be little and nobody will tell me that I have to let him go. Somehow, I don't think avoidance will work.

My Mom brought up "the k word" and I had a difficult time answering her questions. Scott and I have already decided that, although full day kindergarten is offered, we want Robby to go for half days. We worry that the transition from being home all day to going to school full time will be too difficult--for all of us. I've received a lot of criticism from friends and family for this decision, but going half day just feels right.

I have been careful to shield Robby from my emotions and he is excited about going to school next year. I have a few more months to wrap my head (and heart) around the concept. Even though he will only be going for half days, I know that he will adapt and that our relationship will change once he starts going to school. Well, tears are now streaming down my cheeks, so I will stop writing about "the k word." Have I mentioned that I hate change?

BAM BAM BAM

It is not an exaggeration to estimate that I have hundreds of little toys cars throughout my house. Robby has at least 50 dinosaurs, a lifetime supply of balls in various sizes and enough trains to fill all three layers of track on the train table. A small city zoo, filled with various stuffed animals, has taken residence along the walls of Robby's bedroom. There is little doubt that a boy lives in this house!

Last summer I finally acquiesced and agreed to buy Robby two plastic swords. He had developed a new fascination with all things piratical and was using any hard, long object as a sword. On principle I don't like play weapons, but we allowed the toy swords because both Scott and I were tired of ducking from swinging brooms, mops and sticks. Simply put, foam and plastic hurt less.

We have not allowed Robby to play with toy guns. In fact, we have avoided shows that feature guns and violence. We were successful at keeping "playing war" at bay in our house--until a few weeks ago.

Robby walked in on Scott playing a video game and everything changed. My little guy was instantly enthralled as he watched Daddy "shoot robots." Since that defining moment, Robby's interests have drastically switched. Now his little world revolves around guns and shooting robots.

First thing in the morning Robby asks me if his Daddy is going to shoot robots when he comes home. My little "robot cop" has even snitched the phone and called his Daddy at work to inquire about shooting more robots. He walks around with his finger extended, screaming "bam bam bam" randomly through the house. I was horrified when he pretended to shoot the butcher at our grocery store. I found myself constantly saying, "Don't shoot me or anything else alive." He has taken his new obsession to a new level!

Friday afternoon Scott came home from work with a present for Robby. Much to my chagrin he bought the Robot hunter his very own Robot shooting video game for the Wii, complete with a controller gun. Robby was so excited he simply began to squeal, flap his little hands and jump. His reaction was too cute for me to be frustrated at his Daddy for breaking our agreed upon rule.

I now see the logic behind Scott's gift. Robby has spent hours hunting down robots on the Wii. The plastic gun, confined to video game use only, has minimized the random finger shooting that was previously pervasive. Robby can now shoot robots independently which frees up Scott in the evening-- to perhaps help with the dishes.

Sometimes, Daddy's do know best. He recognized something that perhaps I failed to acknowledge or understand. Boys are attracted to good vs. evil games. Snakes, snails and puppy dog tails (and shooting robots) that's what little boys are made of. At least, for right now, that's the best description of my little boy!

Looking at his aim I doubt he'll ever be drafted as a sniper. I'm also not sure why he taunts the robots by saying that they are "yummy." (And please ignore the clutter of my bedroom.)

Ouch!

Since I became an amputee I have learned that, in many ways, my life is lived by a series of contingencies. I will make plans to attend events etc., but my friends and family realize that my attendance is dependent upon how my leg is feeling. Thankfully my "bad leg days" are few and far between, but I live with the reality that it can happen at any moment.

Nerve and skin issues can flare seemingly without cause, making walking painful and laborious. In addition to physical breakdown, my mobility is dependent upon manufactured devices. At any given time, one of my prosthetic components can fail rendering me unable to walk without pain.

Over the past few days I have experienced one of the dreaded amputee monkey wrenches. I am currently experiencing a prosthetic malfunction. To be more accurate, we suspect liner issues are to blame. My stump has formed a large purple/ red bruise on the tip, and it looks like I have a giant hickey on my residual limb. If being ugly and discolored wasn't enough, it hurts.

Much of treating prosthetic/ limb issues is a system of trial and error. The socket is still comfortable and I have not experienced volume fluctuations, but I suspect that my leg is pistoning which is causing changes in the vacuum pressure. Basically, I feel like the liner is not grabbing onto the side of the socket, and I am now subjecting my limb to being sucked down with each step.

Yesterday morning I put my "to do" list on hold (it was cleaning so I have to admit that I was not exactly heartbroken) and went to see Elliot (my prosthetist). We tried a larger liner, hoping that the extra material would create a firmer hold. I was only able to wear the liner for a few hours before my leg began to cramp and hurt. Looking at my limb I quickly realized that the larger liner made the situation worse.

We are back to trial and error, one of the most frustrating parts of living as an amputee. I need to wait for my leg to heal before we make another change. I can't go without wearing my leg, so healing will take longer. In the meantime I am wearing my running leg instead of the Proprio (the Proprio is heavier which may be contributing to the problem) and my original liner.

I know that in the scheme of limb problems, mine is minor. However, it is these small inconveniences that serve to irk and annoy me. Sometimes, being an amputee requires a lot of patience. Unfortunately, patience is not one of my attributes!

Technology

Bionic technology stands to revolutionize the way that prosthetics are used by the amputee. Until recently, prosthetics were primarily limited to combinations of carbon fiber and titanium. With the introduction of miniaturized computers, batteries and motorized components, prosthetics are finally making strides towards realizing the ultimate goal--to replace a limb with a fully functional device.

While at the conference I was afforded the opportunity to learn about the new Power Knee 2. In full disclosure, this is an Ossur product. However, Ossur does not support this blog and does not influence my opinions of their products. (If you need proof of this, do a quick search on my experiences and thoughts concerning the frustrating seal-in liner that does not stay in place on my shapely thigh. I firmly believe that the liner was molded on Icelandic women who must not have large legs!)

The Power Knee 2 is a fully bionic prosthetic knee. Until now, microprocessor knees have not been able to move anything other than the joint that they were designed to replace. The Power Knee takes the prosthetic knee to the next level.

This is the first lower-extremity prosthetic designed to replace the muscle that was lost during the amputation. True to its name, the PowerKnee utilizes a miniaturized motor which is strong enough to move the wearer. With experience, the above knee amputee is able to walk up stairs in a leg-over-leg fashion.

The Power Knee 2 holds a lot of promise for the above knee amputee. This device allows the individual to walk in a normal fashion, utilizing the same musculature to walk that is used by those who have both legs. The introduction of power into the prosthetic knee has reduced the strain that is typically placed upon the sound side.

Unfortunately the knee is not easy to master. In order to be an effective user, the amputee must, in essence, unlearn everything about how to walk with a prosthetic. It takes six months to one year for the individual to adjust and to properly utilize the features of this powered prosthetic. I suspect that the steep learning curve is going to be a deal breaker for some.

The PowerKnee holds the same promise for above knee amputees as the new PowerFoot, by iWalk, does for those with a below knee amputation. Unfortunately the PowerFoot will not be available for three more years and currently costs $50,000. For some reason, I don't think Elsie my insurance adjuster would approve this device, based solely on the price tag alone!