So this week has brought some major relief but also some major challenges. Here is a glimpse at the last three days in the life of us!
As a quick recap, Jake has a genetically-inherited neuropathic disease known as CMT (Charcot Marie Tooth). The most basic of basic explanation of this condition is that he does not have much feeling below his knees. This can lead to muscle weakening and other injuries to feet and ankles. Luckily, from what we have been told, a staph infection can develop and KILL someone within 24 hours. We were lucky that Jake’s staph infection was not that aggressive, and we had a few days before things got really bad.
Monday: 8:00 am
So after meeting with Jake’s neurologist who is a specialist in CMT, Jake decided he was interested enough to do the genetic testing to find out exactly what variation of CMT he has. We may find out that he qualifies for any studies that he can participate in to help the community and get more answers.
Monday: 10:00 am
While waiting at the neurologist appointment, we call SRT to see if we can pop by to see if someone can take a quick look at Jake’s prosthesis. Over the weekend Jake’s prosthetic leg was making a “metallic” noise. Which we believe (based on past experience) might be metal shavings in his pylon. We go 3 blocks north of the Neuroscience Center and stop by to see John at SRT and it is resolved in less than an hour!
Monday 12:30 pm
Jake notices that every step he takes results in a noise that he describes as sounding like he was a cowboy wearing spurs on his boots. Not wanting to provide his office with a soundtrack for his steps, he calls back to SRT and asks if he can come back in! They have an opening at 2:00 pm, so he plans accordingly. *sidenote: We LOVE our team at SRT! Sarah is always so wonderful when we call and when we arrive! Toby and John are so much more than prosthetists! I can’t even describe what a blessing it has been to have them along with us on this journey!
During this appointment, it is discussed the possibility of hand-casting for a replacement second socket. The thought here is that since Jake’s leg was being compressed so much when the machine made the cast, that a lighter touch would help–so hand casting would be making the mold of Jake’s leg without the compression of the machine.
Monday 2:30 pm
Jake’s leg is covered and wrapped in plaster cast strips, then lets the cast harden. Since this was such a last minute decision, I was not able to be at this appointment, so of course, I make Jake record everything on his phone and take a bunch of photos. Aside from a few jokes about his wife “making him” video the appointment, it seemed like a great appointment. John did a great job hand-casting Jake’s leg and we have a follow-up for a diagnostic appointment in a couple days.
Wednesday 8:00 am
We arrive back at SRT for Jake’s fourth visit in 3 days. Though since his pain is totally under control, it was nice to be advancing the process with a plan! That plan is that we are “scrapping” the original second socket and starting from scratch with the hand cast mold John did on Monday. So at this point, Toby has used the mold to create a diagnostic socket that is made of clear plastic!
First, measurements! The number times Jake’s leg is measured is nearing the hundreds I’m sure. Then, Jake puts on the diagnostic socket and puts his residual limb on a stand, and stands in it. Sounds simple right? Well then comes, more measurements!
Overall things with the second “second” socket are progressing well! We go back Monday afternoon for the diagnostic walking appointment. This will be where they make adjustments to the clear socket based on the measurements today, and they will switch it put it on his leg and he will get to walk in it. Then they will observe and measure and make tweaks! Then they will use that to create his carbon fiber socket!
Wednesday 9:00 pm
Are you as exhausted from reading this as we are from living it? Yikes. We are just hoping that Jake’s pain level stays low (today it was 2) and we can give SRT a break from the Senesacs!