Today, a miracle happened:
Malachi sat like this, all by himself, for the entire time it took for me to help his brother go to the bathroom. That's probably two minutes he sat comfortably in a position that he couldn't even tolerate a few days ago.
This is something I have been waiting and hoping for what seems like forever. Perhaps you can imagine how difficult it is to handle young twins in locker rooms, bathrooms and other public places when one of them cannot sit independently. I have had to lay Malachi on the floor more times than I'm willing to admit.
Malachi's accomplishment is directly a result of the Selective Percutaneous Myofascial Lengthening (SPML) surgery we did last week with Dr. Roy Nuzzo in New Jersey and the ankle-foot orthotics (AFOs) by Dr. Paul Jordan in New York.
It's been less than a week since the surgery and Malachi's body is radically different. His stance is much wider and his steps don't get tangled up together nearly as much. His lumbar curve is pronounced and he is able to make increasingly fine adjustments in his thigh muscles to correct for balance (both of these are big reasons he was/is unable to sit independently). His legs also open in frog legs like a baby's, which he was unable to do before, preferring to keep them straight and rigid.
All of this is the result of six tiny incisions during an 18-minute out-patient procedure that required little more than children's Motrin to recover from.
How did Drs. Nuzzo and Jordan do this??? Great question. Here is my limited understanding of the procedure, but there's also this explanation from Lori Poliski, the president of the Hydrocephalus Research Guild and this one from Dr. David Yngve, who is the only other American doctor who performs this surgery.
As we know, Malachi's disability started in the brain. Despite descriptions of cerebral palsy as a muscle disorder, there was nothing initially wrong with his muscles and limbs. However, as he grew to be today 10 times his size at the time of the injury, his muscles were repetitively used in pretty much the same way because his brain had a hard time coming up with a huge variety of ways to move. Because form follows function, his hamstring muscle, which twists from the back of the pelvis to the top of the knee became very tight and cordlike. By age 3 1/2, even if he could imagine using it in a different way, the mechanical function of the muscle is stuck in this essentially two-dimensional plane.
Try this. Bend your knee and flex your thigh. Do you feel a tight cord just under the inside of your knee? Now follow that cord up your leg until you can't feel it anymore. If you have a typical body, the tendon will disappear into muscle. Malachi's didn't. It was a hard, rope-like thing pretty much all the way to his hip. If it had continued like this for a few more years, we would have had to do traditional tendon lengthening surgery with casts and months of recovery time in the hopes of avoiding the ball of the femur rotating its way out the back of the soft pelvic cartilage: a dislocated hip.
During the procedure, Dr. Nuzzo took a tiny laparoscopic knife and made small incisions into the tissue between the tendon and the muscle called the fascia. I will not pretend to understand why this works. My mental image is of a hammock that has been twisted up and by putting holes in it, it is allowed to unfurl again.
In addition to that, Dr. Nuzzo added ethanol blocks to certain nerves in Malachi's legs. Dr. Nuzzo explained that when certain muscles are pulled too tight, they aggravate the nerve ending so that the smallest thing sets them off. For example, he would tap one of Malachi's feet and the other would jump. Over time, those married reactions cause the associated neurons to fuse together in the brain, like Pavlov's dogs who salivated at the sound of a dinner bell. To correct this, he injected alcohol onto the nerve ending to dissolve the fatty layer around it. Electricity travels slower through water than fat, so the brain has a fraction of a second longer to figure out where the signal is coming from and — no false reactions. Because Malachi is a child, the fatty layer will grow back in about three years.
We also got AFOs from Dr. Jordan, but I will save that for tomorrow because he is brilliant and kind and deserves his own post.
As for Malachi, he hasn't said much about his new leg experience except to be curious about the purple bruises around the incision sites. But on the drive home from this miraculous bathroom experience, Malachi started laughing hysterically in the back seat. I turned around to see what was so funny, but all I could see was him staring at his feet. I asked him several times what he was laughing about, but whatever it was was so hilarious that he couldn't answer and just kept laughing and laughing. I'm guessing he liked what he saw.