The Thrill of Victory, the Agony of DeFeet

Max was born with wonky feet that curled into one another.  At the time, we thought they would naturally correct themselves as the baby scrunch started to disappear.  And in some ways, they did.  I look at pictures of the first year, and they don’t look too bad.   

In fact, in his first few years, he was able to stand for short periods of time without wearing any braces on his feet. 

 However, I do remember him usually being fairly resistant to standing and weight bearing always trying to sit down when we were pushing him to stand.  Given his diagnosis, it was difficult to determine if his resistance was due to his hypotonia or if there was something else inherently wrong.  Regardless, we fell into a bit of a cycle – he hated to stand so we didn’t do as much weight bearing which made him weaker which perpetuated his hatred of standing and so forth.  Then, when he was almost 2 years old, he broke his femur.  The limited progress we had made was further set back, plus now it was shaded with fear that he would get hurt again. 

When he was two and half, he was fitted for his first set of SMOs to provide him with additional stability.  We quickly upgraded to AFOs that went up to his knees.  Although they seemed to help him with standing, he always seemed to be fighting us to both put them on and to wear them.  (Yes, he looks happy in the pictures - I rarely take pictures of my children angrily screaming at me)

During this time, he also started to lose his hearing (leading to the dreadful cochlear implant surgery)….and he constantly struggled with feeding issues (leading to us transition to a labor-intensive blended diet)….and he started to suffer from adrenal failure and you get the point – somewhere along the way, the braces were deprioritized.  We still would put them on and try and work on standing and taking steps, but honestly we were fighting battles on a LOT of fronts and his feet just didn’t get the attention they probably deserved.

Then, the seizures started and it was clear that the neurological issues were causing damage throughout his body, particularly in causing his feet to become even more pointed and stiff, so much so that his AFOs eventually no longer fit and the physical therapist advised that it was no longer safe for him to be weight bearing even with a sizable wedge to support his feet. 

During the summer of 2022, we went to the GFPD conference where we had a conversation with a physical therapist.  I was complaining about lifting him and she laid out what the next few years would look like if we weren’t able to use his feet for a load bearing transfer i.e. if we had to fully lift him every time we wanted to move him.  He is only getting bigger and soon our house would need to be a series of lifts and transfer systems.  It was clear – we needed to prioritize getting him back to weight-bearing on his feet. 

Our first step was to meet with his physiatrist at Lurie’s Childrens Hospital in Chicago who proposed a series of casting in which he would get fitted for a new cast every 2 weeks.  These casts would move and adjust his feet with each iteration and hopefully slowly get Max's feet back to a typical 90°/0° angle.  

Because the casts are permanent, Max would no longer be able to take baths or go swimming (his faves).  They also discussed surgery in which they would need to remove a portion of the bone in his foot – and then more casting.  Because his feet were so severely impacted, there was a good chance that the casts would not be as stable and could shift on his legs/feet.  If that were to happen, we would have to go to the emergency room immediately to have the casts sawed off.  

“Don’t worry” they told me, if the process doesn’t work, they will just “amputate his feet.”  ("and that made me want to diiiieeeee..." sung in the voice of Taylor Swift).  Needless to say, the whole process was extremely anxiety inducing.  I would just lay awake at night wondering how we would get through it and blaming myself for letting it come to this (would it be my fault if Max had to have his feet removed?!?)

While we waited for our turn (the waitlist for the casting program was intense), we went and saw his neurologist.  As I laid out my hesitations, she advised us to visit with Dr. Pavone at Marianjoy Rehabilitation Hospital for a 2^nd opinion. 

When we met with Dr. Pavone, she suggested that perhaps we could do removable casts.  Same process as at Lurie's, but we would be able to remove the casts for baths, swimming, and even if Max was just having a bad day.  Todd and I figured it was worth a try – if it didn’t work, we could always try the more intensive program at Lurie’s.  Plus, she had never mentioned amputating Max’s feet, which I greatly appreciated. 

We started the process in September and we are currently on our 6^th set of casts and I can’t believe the results.  We’ve gone from -45° to -20° on the right foot and -60° to -28° on the left foot, plus the curvature in the feet has also been partially corrected.  In fact, the results have been so incredible that Max is now once again able to stand in a stander with the assistance of the braces and a wedge for the first time in 3 years.  His teachers couldn’t believe how tall he’s gotten!  We plan to continue the process as long as we’re still seeing results. 

It feels truly like a Christmas miracle and we are so continuously grateful for the knowledge and kindness of the staff of Marianjoy, Dr. Pavone, and his physical therapist, Trinette . 

Personally, I’m equally grateful for my husband who has handled the majority of the process from the appointment scheduling, to making sure the braces are on correctly each and every day, to doing a few of the appointments solo due to my work commitments.  He has been an absolute champ and truly deserves all the credit! 

As a final fun note, the results have been so strong that Dr. Pavone is planning to feature Max in her upcoming publication about the process and program! 

Cheers to progress and 2nd opinions!  We hope 2024 brings each of you joy, happiness, and hope in the new year!