Just an FYI: CMT SUCKS

Yohan’s Foot Surgery- #16

Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”.  If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link:

Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”.  If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link: http://www.cmtausa.org/101tips

updated-fpss

As for Yohan, he’s more or less become a permanent fixture in our dining room. Every once in a while I’ll stroll on by, dust him off, rearrange the furniture and water the plants. In front of his computer screen, he keeps himself busy with grad school applications, gaming, writing projects, gaming, reading, and did I mention gaming? He’d be perfect at that mannequin challenge which has gone viral over the past month or better yet, he might be able to break the Guinness World Record for competitive sitting (72 hours).

yo-dining-roomedit

Looking for Yohan? Look no Further!

The only reason I know he’s still living and breathing is that nasty cough he’s had for the past 30+ days. It almost feels like a game of psychological warfare where he’s trying to make me crack, and all truth be told, he’s succeeded. I’m worn down, my will is broken and I’m more than ready to divulge any and all information I might harbor. Let the interrogation begin!

The last time I checked in, Yohan had been cleared to walk and start PT. His progress has been molasses slow since then. Why? Pressure sores. After a week or two, these sores heal, and as soon as he’s given the green light to resume walking, they break open again. It’s so frustrating!! After surgery and casting, all his hard-earned calluses dropped away, leaving fresh, pink, baby skin. Problem is –  Yohan is 23 years old and he’s totally over the baby skin stage. Like, WAY over.

baby

He’s had a shoe insert made to relieve the force on the pressure spots. And we’ve been back and forth to San Francisco 3 times in the last month to have the orthotic modified, but we are not there yet. Just this morning, that stupid sore reopened, which means one thing: Stay off the foot and get back on crutches. UGGGGGHHHHH.

Yohan will be seeing Dr. Pfeffer next week for a consultation and we’ll go from there. If we can’t take the pressure off that one spot, he may need another procedure on that foot. No way are we delving into the second foot surgery until he is 95% ambulatory with the reconstructed one. We do not know how long that will take and grad school applications have been submitted for a fall 2017 admission.

Yohan does not like surprises. He yearns for certainty and security. We all do. How do you plan your life when you can’t really plan your life? Message from the universe: Shit happens and you just have to go with the flow. You make the best of what you’re given and deal. It’s definitely not optimal, but what choice do you have? CMT sucks.

life

Question: Dealt with foot sores? Share how you managed them!

Recovery 101-Put Your “Breast” Foot Forward!

Yohan’s Foot Surgery #15: Put your “Breast” Foot Forward!

 

What else could possibly go wrong? After the pressure sore on the bottom of Yohan’s foot had more or less healed, his big left toe got infected. At this point, he was finally in a plastic brace instead of a big, bulky walking boot. At last week’s follow-up appointment with Dr. Pfeffer, he prescribed a 10-day course of antibiotics. He also commented on how swollen Yo’s foot and leg were. He ordered an ultrasound to rule out any blood clots and recommended the use of an elasticized compression sock. A compression sock? We’ll give it a go, but how in the world are we going to put his puffy, stiff foot/leg in a binding sock? It’s going to be like trying to fit an extra fluffy comforter into a shrunken pillow case. And then I saw these compression socks on-line:

socks

Suddenly, I felt super motivated to buy and try these decorative socks on Yohan. He will just LOVE them!

And speaking about that left big toe, which curves to the left, it has always had a mind of its own, like my cactus. The other cacti follow the rules and grow straight, while the rebel cactus first has to create drama by sprouting way to the left before moving upwards.  Breaking the bad news, Dr. Pfeffer calmly voiced his opinion, “You might want to think about a second surgery to straighten that toe before it causes too many problems. With CMT, it’s not uncommon to undergo several surgeries on each foot to fix everything.” Honestly, if my thoughts had become words, they would have sounded like this: “A second surgery on the left? Let me think about that…… NO!” And then, for effect, I might have added, “Have you taken that internet insanity test I wrote about in my previous blog post?” But there were no words to be heard because we just sat there in silence and moved on quickly to the next topic.

rebel-cactusbunion_cartoon

Rebel Cactus                                                     Rebel Big Toe

The best news of the day was that Yohan could now try walking without brace and/or boot. There were no more restrictions on movement. He was not only allowed to start physical therapy but was also given the green light to walk, point, stretch, twist, turn and do the loopty-loo. Dr. Pfeffer’s parting sentiments were, “Yohan, I could not be happier with the outcome of your surgery. Your foot is perfect! You can start walking!” We left feeling pretty darn optimistic.

But the following day, we got a reality check at the Los Altos Farmer’s Market. I think the universe was telling us to slow down…..way down. For the first time all summer, Yohan decided to join me, my friend Eva and her 9-year-old daughter, Bella, to buy our fruits, vegetables, and dinner. Although Yohan walked with a limp as he got used to his new foot, he was doing extremely well, until he fainted. Yes, he passed out cold, but not before Eva stepped in to save his life.

Here is a summary of events: His sweaty palm grabbed ahold of me as he started to lose consciousness. As his eyes became unfocused and rolled up into his head, I knew I would not be strong enough to keep him upright. Every other day, I lift my 2 and 3-pound weights to keep my upper arms from sagging, but there was no way I would be able to hold up this 150-pound kid who was falling to the ground in slo-mo.

That’s when our superhero, Eva the 6-foot Diva jumped in and saved the day. Somehow, Yohan got flipped around, facing Eva, allowing her to control his descent.  With her 38 G sized breasts, she provided inflatable side airbags to cushion his fall and prevent any chance of concussion. When Yohan’s smartphone went crashing to the ground, I knew he was out like a light. I was a little worried Yohan would suffocate between her large billowy boobs, but he was not even purple when she gently sat him on the ground.

My hero, Eva

 

 

My fellow Los Altans were so accommodating. Before we knew it, Yohan was sitting on a chair, drinking a coke and talking with a nurse. His first question was, “Where is my phone?” Second question: “What happened?” As we explained the chain of events, sparing no detail, Yohan’s cheeks reddened slightly. He was quite relieved to have no recollection of falling.  At least that’s what he said.

While this whole scene unraveled, I made sure not to lose my place in the long line of people waiting for corn and potatoes. And as soon as they gave me my order, I too jumped into Eva’s motherly arms with Bella. What? I needed a hug! That was extremely scary!

As calmness settled back in, we chalked this episode up to a lack of food, too much stimulation and pain. He simply tried doing too much, too soon and ended up having an unforgettable experience that we will never, ever let him forget. As my friend Donna would say, “Eva, thanks for the mamories!”

 

 

 

Surgery is Imminent

Yohan’s Surgery #1 – Surgery is Imminent
June 20, 2016
The Eve of Surgery

 

His toes are curled, especially the pinky toe which begs attention by standing just that much higher to make wearing any shoe a challenge. His crescent arches make walking a balancing act. His calves are as tight as the string of a bow and his ankles are turning out as the supporting tendons lose their grip. Thick, but hard earned callouses are just a bonus for winning the CMT lottery.

CMT is usually passed down from one generation to the next. It is inherited. Yet, neither my husband nor I have it. Yohan is the first person in our families to have CMT. His CMT is caused by a spontaneous genetic mutation. A mutation that can be passed on to his children, his children’s children, and so on and so forth.

Yohan will have reconstructive foot surgery tomorrow morning at 7:00 am, a surgery which has been planned for a year and scheduled for 3 months.

CMT foot

A few weeks ago, in a moment of sheer fear and anxiety, I clumsily suggested that we might want to get a second opinion on the necessity of surgery, a surgery that was only 3 weeks away.

In shocked disbelief, Yohan blurted out, “Are you expletive kidding me? After choosing to put my life on hold for a year after graduation? After all the in-depth discussions and conversations we’ve had?   No way. I’m resolute in my decision. Now let’s get this over with and put it behind us.”

Enough said. My worry asked the question and the voice of reason responded: the surgery is a go. The reality is that Yohan can no longer run, walk with confidence or stand without pain. It’s time. It’s time for an upgrade that only the hands and skills of a competent orthopedic surgeon like Dr. Pfeffer can offer. After tomorrow’s surgery and a 6-month healing process, Yohan’s calves will relax, his pinky toe will align, his arch will flatten and his tendons will be strengthened. Tomorrow brings the promise of less pain and more stability.

Any surgery is risky. And the recovery for this particular surgery is long and tedious.  But the possibilities of a new tomorrow are endless. So, when anxiety rears its ugly head, I am guided by Yohan’s words: Plan for tomorrow, then live in the now. Our brightest future lies in the sound decisions of today.