Sick Day

Robby woke up yesterday morning complaining of a sore throat and headache.  After verifying that he was running a fever I sent him back to bed. I texted his teacher and went about rescheduling all of my appointments for the day. (Between work meetings, appointments and personal errands, I had an extremely busy day planned.)

As the morning progressed Robby's moderate fever began to lessen. Soon he was at that phase where he was well enough to play Xbox on the couch but too sick to go run around outside. Because his brother was sick, Timmy and I spent the majority of our day outside playing. I blew up our moon bounce and we jumped for almost an hour in our yard. We looked at stick and rocks and also spent a lot of time picking up nuts from our driveway.  (I wouldn't let him then throw those nuts at the car and I held my ground despite his red faced protests.)

It wasn't the busy work day that I had planned, but thankfully I have enough flexibility in my schedule to adjust for the unexpected. I am hoping that a solid nights sleep will knock the bug out completely, allowing my little Koopa to go back to school today.  Thankfully I have the weekend to play catch up after the  sick day. 

Rough Housing

Yesterday I sprung Robby from school a little early so that we could enjoy the fabulous fall weather at the farm. Before the judging starts, know that the early dismissal had the blessing of his teacher. His school values off campus experiences and encourages families to participate in and enjoy community resources.  This educational philosophy is one of the many reasons that Scott and I have chosen this school for Robby. 

Both boys love our weekly farm visits. Robby because he thoroughly enjoys visiting the animals and playing on the various structures and amusements. Timmy simply delights in spending time outside with his big brother. Usually content to tag along behind, pure joy emanates from Hamlet on those rare occasions when his brother actually plays with him instead of just next to him.

Unfortunately, rough housing with a toddler is vastly different than rough housing with another 9 year old.  Timmy doesn't realize that his brother is being rough and smiles through the pain inflicted simply because he is happy for the attention.  Robby doesn't appreciate that he is being too rough because Timmy continues to smile and giggle. I end up standing on the sidelines squawking for Robby to calm it down and play nice. This cycle typically continues until either Robby becomes bored and finds a new activity, I intervene or Timmy becomes hurt. 

Yesterday our fun farm visit ended with me dabbing blood off of the tip of Timmy's nose. Despite my constant warnings to calm down the play, my littlest guy ended up getting hurt on the jumping pillow. It is just a brush burn injury, but hopefully drawing blood will serve as a reminder for Robby to heed my warnings.  Thankfully, his pain was quickly soothed by a few pushes on the swing and feeding the goats. 

Update on the Medicare Proposal

I wanted to provide a quick update on the Medicare proposal that would significantly impact access to lower limb prosthetics. My life, and those of my friends and colleagues, was consumed by this issue throughout the  month of August. As soon as the deadline for comments passed and the calendar changed the entire community has been existing in a holding pattern. 

As it stands right now, nothing official has transpired. CMS and Medicare are not obligated to modify the proposal based upon the hearing and comments submitted, but most of the key players agree that changes will be made by committee members. Rescinding the proposal entirely and starting from scratch is a long shot. It isn't a matter of if the proposal will be enacted, but rather how detrimental the final version will be on accessing lower limb prosthetics. 

I am an eternal optimist and remain hopeful that the most horrific aspects of the proposal will be removed from the final version. If I were to bet, I would lay my money on the elimination of a natural gait requirement as well as the restrictions based upon the utilization of other mobility aids. I suspect that the other aspects of the proposal will be adopted with slight modifications. 

There is no timeline for CMS to act upon their proposal. They can release their final draft today, next month or they can decide to sit upon it indefinitely. The absence of a definitive deadline is frustrating for everybody who rallied and worked tirelessly on this effort.  In some ways we are all in a holding pattern, just waiting to learn our fate.

Our petition to the White House met the minimum required for a response within 17 days. I am extraordinarily proud that ours is the only disability oriented petition to ever meet the threshold required for a response. The community rallied behind the petition and our #NotALuxury movement, forcing the White House to respond to our concerns. We expect to receive a response by the middle of October.

Of course, meeting the requirements for  response and rescinding the proposal are two entirely different things. We do not know what the White House response will look like, nor is Medicare obligated to consider their input when making a decision.  Again, we are caught in a nerve wracking waiting pattern. 

If you haven't yet contacted your elected officials concerning this issue, I encourage you to do so. We need to keep pushing this issue and fight to keep the concerns of the community in the forefront of this fight. Rest assured that I am staying on top of this issue and that I will keep everybody apprised of any developments in this blog.

Exhaustion

Yesterday was not my best day. Timmy woke up obscenely early. By 3:15 he was out of his crib and running around the house, activating every musical toy while breaking out into a dance. I tried to convince him to go back to sleep but I could tell by his energy that he was raring to go. Watching him jump on his trampoline while trying to sing along to his Leap toys, I knew I was going to be putting my coffee maker through its paces. 

By lunchtime I was spent and the near constant flow of caffeine was merely keeping me upright.  Timmy was still going strong, happily playing and creating as much mischief as possible. I was struggling to keep up with my high energy toddler. When I become overly tired I become emotional and depressed, which explains why I was crying while pushing him on his swing set.

At one point I decided that allowing him to unroll the toilet paper through the living room was worth the few moments of quiet rest that the activity afforded.  Unfortunately when the roll was completely unwound the freshly papered living room only contributed to my feeling overwhelmed. I decided to leave the mess.  When Robby came home from school I offered him "a whole quarter" to clean it up. He happily accepted the job and, if you ask me, I made out on the deal. 

Timmy slept better last night and didn't wake me up this morning until almost 5. I'm feeling better and my sleep deprived depression has lifted. I'm hoping that today is going to be a better day!

Part of the Group

For the first time since Robby began school five years ago I actually feel comfortable around the parents of his classmates. Being involved in his life, through whatever avenue necessary, has always been a priority. Despite my efforts to forge friendly relationships with the other parents, I have habitually felt like an outsider.

I suspect that my feelings of being ostracized are probably equal part reality and perception. I have almost a decade on the majority of the other parents. Other than our kids, I just don't really know what I'm supposed to talk about with them. Typically my conversation fodder runs out after five minutes, leaving awkward stumbling and silence until I can figure out how to escape.

If I were to be completely honest, I also feel different from the other moms because of my disability. The fact that I utilize a prosthetic leg is well known and quite obvious. While I'm not ashamed of my amputation, I continue to struggle with feelings of isolation because of it. I can't hide the fact that I look "different" than all of the younger (and considerably perkier) moms.  When I am in a social situation with other parents, I tend to retreat which only intensifies the feelings of not belonging.

While I love chaperoning Robby's field trips, part of me always dreads the forced socializing. Last Friday, while Robby was chomping at the bit to spend the day at the Battlefield with his friends, I was trying to mentally prepare for a day of awkward and forced conversation. Thankfully my worries were for naught because I actually enjoyed talking with the parents who came on our field trip.

I'm not sure if I am more confident or if this group of parents is different, but I felt comfortable and part of the group. I didn't experience the feeling of being isolated from the parent clique. Instead, our conversations flowed organically and comfortably. I actually think I could be friends with these people outside of school!  Who knows, this may be the first year I don't dread taking Robby to birthday parties.