About Me

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I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations. This blogger is available for hire! Let's talk and learn how a blog can expand your business.

Friday, October 11, 2013

My Secret-- Revealed!

It is hard to believe that I am going to be 40 this year. I don't feel middle aged, and to be honest I do not appreciate that the fact that it is now true. Despite my whining and pleas with the universe to halt time, I have come to realize that 40 is looming and there is nothing I can do about it.

My friend Tammy and I have been talking about doing something amazing for our 40th birthdays. I suggested zip lining, bungee jumping, or even participating in a sprint triathlon. Tammy vetoed all of my ideas and countered with going to a winery, spending the weekend in Time Square or getting a make-over.  Obviously we have different definitions of "amazing."  Undeterred, we vowed to come up with an adventure that we could both approve.

In the meantime, my plans for the next few years have drastically changed. Although the impending change will dramatically impact everybody in my family and despite being terrified, I have never been happier.  Of course, giving the current situation my plans for my 40th birthday will have to be adjusted.  According to my doctors I will be in the hospital on my birthday giving birth to our second child.

I am ecstatic to be expecting another child, but I also have to admit that the prospect has me terrified. I'm considerably older now, and there are more risks. I also know that I will probably be the oldest Mom on the playground. Despite these fears and the potential obstacles, I am elated.

We haven't yet told Robby that he is going to be a big brother. I know that he will be a wonderful role model, but I also realize that this is going to be a considerable adjustment for him. Scott and I have decided to delay telling Robby until we are certain that everything is okay with the pregnancy.

People have warned me to keep my pregnancy secret in case something goes wrong. While I understand that perspective, I also know from experience that support is paramount when a "worst case scenario" occurs. Remaining silent does not lessen the loss, and in many ways isolation compounds grief.  Besides, I've never been very good at secrets!  I'm hoping and preparing for the best while trying to remain cautiously optimistic.

I am looking forward to sharing this new journey through this blog.

Thursday, October 10, 2013

Walking for Research

My amputation is only one experience which drastically changed the course of my life. Easier to disguise, yet just as profound, is my bout with cancer. Being diagnosed with this horrible disease, and surviving, inevitably changes the individual. I know that I see the world differently because of my battle. Although I still become frustrated and upset (Robby and Scott would certainly agree) I feel better equipped to keep trivial issues in perspective.

Cancer taught me how quickly everything can change. It also taught me to appreciate others and to seek happiness in my life. I know it sounds cliche, but I believe I am a better person because I survived this disease.

Some say that I am unlucky because I was diagnosed with cancer; I say that I am lucky because I survived. Too many women succumb to gynecological cancers. Far too many valiant women fight just as hard as I did and did everything "right," yet they were not able to survive the evil cells invading their bodies. Medicine is good, but sometimes plain luck is a larger factor in determining survival.

Despite a heroic fight against the cancer, my friend Vashni died last year. She was a newlywed and had a lifetime of happiness ahead of her. Instead of living happily ever after, she was thrown into a war with her own body. In the end, cancer robbed the world of a genuinely loving individual.

Next month I will be joining my friends as we participate in a walk to raise funds for gynecological cancers. Although these cancers don't receive the press that breast cancer garners, they are just as detrimental to those afflicted.  If you are able, please consider sponsoring me on this endeavor. I know far too well that everything can change in an instant and that time is of the essence when searching for a cure.

Wednesday, October 09, 2013

Learn Your K-Levels

Today I will be recording another podcast with my friend Dave, also known as the Limb Blogger. Admittedly recording podcasts was not something I adored, but with time I have become more comfortable with the format. The fact that Dave and I are friends and comfortable chatting certainly makes the recordings less dreadful. 

We will be talking about K-Levels, a rating scale which impacts every prosthetic seeking amputee. Although insurance requires that we all abide by this system, I am shocked at how many amputees do not understand the rating scale. I have always felt that knowledge is power, so I want to take this post to explain the imperfect yet highly weighted K-Level system.

Keep in mind that all of this information can be found on the internet, but I have tried to provide a concise explanation. A word of caution, especially for my female friends, please be safe when conducting amputee-oriented searches online. There are a LOT of creeps out there, and you can easily become prey to their fetishes. I always utilize my Hotspot Shield VPN when searching online. I simply feel safer knowing that there is a shield between myself and those whom I like to keep at a distance.

The K-Level system was devised by Medicare as an attempt to classify prosthetic components. Patients are assigned a K-Level, which must be documented in the medical record by the primary doctor. The classification is used as a guideline when choosing prosthetic components (i.e. feet or knees). An amputee's K-Level is designed to be fluid, meaning that an individual may move through a variety of K-Levels throughout his life. K-Levels are a means to categorize the activities of the amputee in order to determine which components are most appropriate. 

Those with a K-O classification are not ambulatory. These amputees do not have the ability or the potential to walk. It is determined that a prosthetic will not enhance the independence or the life of these individuals.

K-1 amputees may benefit from a prosthetic to assist in transferring (such as from a wheelchair to a fixed chair). These individuals also have the potential to walk, albeit in a limited capacity, within their home or for short distances. Walking at various speeds and maneuvering around environmental obstacles is not deemed feasible.

K-2 amputees are considered community walkers. These individuals can accommodate for "low level" environmental obstacles including curbs, bumps and sidewalk cracks. They can walk for limited periods of time but cannot typically vary their walking speed.

If amputees have the ability to vary their speed and can traverse through a variety of environmental obstacles, they are considered to be a K-3. These individuals can walk through a variety of environments (grass, rocks, hills, sand etc.) without difficulty. The prosthetic is used for recreational and moderate exercise activities.

K-4 amputees rely upon their prosthetic to complete high impact activities such as running and jumping. Many children, active adults and athletes fall into this category.

The term "potential" was included in each K-Level description, providing the practitioner with a great deal of flexibility when assigning patient levels. With recent Medicare audits, prosthetists are becoming more deliberate when referring to a patient's K-level. It is important that every amputee talk with their physician about their K-level and be vigilant about getting the information documented in your medical records. Recent audits are keeping many amputees' prosthetic needs hostage because of inadequate documentation of the K-level.

Tuesday, October 08, 2013

Not in my house!

All of Robby's teachers have described him as both compassionate and intuitive about his peers. He often volunteers to pair himself with a student who is feeling isolated from the group and encourages everybody to play together. Unfortunately, he is not able to transfer his advocacy skills to stand up for himself. My little crusader is often the recipient of manipulation, and sometimes bullying, by others.

This past weekend Robby was playing in the yard with his friend Rowan. The pair often spends their weekends traversing through the woods, hunting turtles and playing with sling shots. The friends were delighted when the house across the street sold to a family with two children of similar ages. To their credit they have tried to include the new neighbors into their games and activities. Apparently the new kids do not play by the same rules and often resort to name calling, taunting and just plain mean behaviors.

On Sunday as I was carrying the laundry up the stairs, I found Robby sitting on the couch while the new neighbors were playing in his bedroom. I asked him why he wasn't in his room playing, and he just shrugged his shoulders.  I insisted that he go back and be a hospitable host. As soon as I opened he door and Robby stepped inside, the little boy looked up from the toy tsunami that he had created and screamed, "Get out of here. We don't want to play with you."

Instead of arguing and pointing out that this was his house and that those were his toys, Robby simply slouched and stood behind me. Needless to say, I did not cower in my reaction. I looked at the boy and firmly directed him to go home. Without saying a word or even offering an obligatory thank you for allowing them to play with the toys, the boy grabbed his sister's hand and left our house. 

Robby was sad for the remainder of the evening and was on the verge of tears as he recounted the situation to his Daddy. After assuring him that he did nothing wrong, we came up with a plan. I reminded Robby that he is expected to be polite and nice, but that he does not have to play with somebody who is being mean. If he doesn't want to play, he can say no or he can come to me to device an excuse for him. I don't mind being the bad guy; after all I figure it is part of my job as his Mom.

Suspecting that something similar happened to Rowan, I called her Mom later that evening. It turns out that my hunch was correct and that the new neighbors were making fun of her outside. Instead of confronting, she just went home. Robby, who was also outside when this occurred, was busy in the tree house when his friend was being teased. If he had been within earshot I have no doubt that he would have stood up for her!

It's sad that Robby and his friend had to learn an unfortunate lesson, but I think that they are both better prepared should it happen again. Robby knows that he is not obligated to play simply because they ask. He is not allowed to play at their house and, for the time being, their interactions need to be confined to our yard. Robby and Rowan will stick together, and if one is being teased or manipulated, the play date ends. Both seemed relieved when I told them that they can always come in the front door when they see the new neighbors outside and that they can walk out the back door to play in the woods undetected. 

Hopefully the new neighbors will mellow and assimilate during the next few months. In the meantime, you can bet that I am going to be mindful of their interactions when playing with my son. I won't allow him to be pushed away, teased or taunted in his own environment!

Monday, October 07, 2013

Don't Ask Nana

My Grandmother used to pack each one of her grandchildren a "goody bag" whenever she came to visit. The highly anticipated gift was filled with ring pops, candy necklaces and other sugary (and sticky) treats which were by no means healthy. Since we rarely had candy at the house, the goody bag and the sugar it contained always created a high level of excitement. 

I suppose that one of the perks of being a grandparent lies in the ability to provide all of the contraband treats to the grandchildren. My grandma would wire us on sugar and caffeine, watch us run around for a few days and then return to her normal life. My parents were left dealing with the sugar fueled emotions and the sticky fingers, walls, hair, and carpets. My Grandma was a hero because she was the benevolent candy distributor. My parents were the enemy because they would try to ration the treats in an attempt to safeguard us from sugar fueled disasters. 

Thankfully Robby is not fond of candy so I never have to worry about my Mom hyping him up on sugar. This isn't to say that she doesn't surprise him with unique and highly personalized gifts that I would never buy for him myself. Some grandparents bring candy, others bring toys. My Mom brought down a cow heart.

The story of the cow heart started Friday afternoon when I picked up Robby from school. He was happily chatting during the drive home when he asked for my cell phone. He told me that he wanted to talk to Nana about something private. After giving him the phone and promising him that I wouldn't listen, he placed the call.  Needless to say, I was shocked when I heard the purpose of his call.  "Hi Nana. This is Robby. Nana, can you find me a heart sometime? I'm curious about what it looks like and I would like to dissect it so that I can learn more. Cutting open hearts is part of science."

After his conversation he handed me the phone. I attempted to persuade my Mom against finding a heart for dissection. Even as I was telling her that he would forget about the heart, I knew I was fighting a losing battle.  The next time he saw her, she was going to have one.

I have to admit that I did not react gracefully when the cow heart was plopped on the center of my kitchen counter. I began to dry heave so violently that I was forced to leave the room. Robby, along with his Nana and Aunt Sheri, went to the back deck to begin the dissection. I stood in the kitchen and snapped a few photos through the window. I couldn't even make myself go outside!

From the descriptions I heard, Robby was also queasy during the heart exploration. He stood at his arms distance from the organ, and required help cutting it in half. My Mom and sister were left doing the majority of the cutting. The amateur biologists were only outside for a few minutes before Robby announced that he had seen what he wanted and that he was done with the dissecting. 

After the heart was properly disposed of, Robby had a fantastic time entertaining his Aunt and his Nana. He certainly does love having company visit! After they left, I asked him if he had a good time. He said that he did, but he also added "I was really not expecting Nana to bring a heart. She almost blew my head off when she opened the bag." I have a feeling Robby is going to be more cautious when putting in requests with his Nana!