What a day

For a few weeks now, my parents had noticed that my walking wasn’t evolving in the right direction. I had difficulty walking and despite my new orthopedic shoes, it was clear to my folks that I was in pain when walking alone without aid.

So last thursday we went back to the hospital in Leuven to see the professor who has operated on me to straighten my legs last year. It was supposed to be a routine check up and maybe we were going to set a date for the next surgery to take the metal out of my legs as I am slowly growing out of them.

The huge UZ Gasthuisberg campus in Leuven

We got up early in the morning and first drove to Brussels to drop my brother off at school. He’s having exams this week so it’s a stressful time for him too right now. After we dropped him off we set course for Leuven. After about 2,5 hours in the car (traffic in the morning around Brussels is a nightmare) we arrived in Leuven at half past nine. The hospital has moved since the last time we were there, so we now had to find our way around the huge campus of UZ Gasthuisberg in Leuven instead of the small campus at Pellenberg where we used to go. Now this is one of the largest hospitals in the country and my dad had forgotten to bring my stroller. So I had to walk, holding both my parents hands, from the parking lot to the main entrance hall – what a challenge!

Once in the hospital my dad checked me in and we were directed to the radiology to take another picture of my legs. “Follow the green arrow” was the instruction we got… and boy, that was a long walk deep into the dungangs of the hospital. My mom took me on her back because my dad can’t carry me yet after his operation earlier in November. I liked it very much riding horseback on my mom 🙂 People were staring at us and some found it funny to see me enthusiastically kicking my mom in the side to go faster. We made it to the radiology and luckily there was no line in front of us so we could go straight in to get the picture taken of my lower body.


My latest leg picture
Waiting for the professor in UZ Gasthuisberg Leuven

After the rx-picture, my parents dressed me again and I went back on my mothers back for another long walk to new building where the children’s hospital is now located. The brand new building is super futuristic and looks great. Wide white hallways led us to the elevators and we went up to the second floor. Automatic check-in with a QR code and within 10 min the monitor told us in which examination room we could enter.


As usual we got to sit down first with some supportive therapists like an occupational therapist and the dietitian before we got to see the professors assistant. The dietitian weighed and measured me and showed us the results on a growth curve. Obviously I’m way below the curve but she told me that ‘I have my own curve’. The good thing was that I have been growing faster since the last two measurements so it looks like I’m gaining on the average curve – I’m sure the growth hormones have something to do with that.

I have my own curve
Showing the doctors how I can stand and walk with my new orthopedic shoes

By then is was 11 o’clock and we were finally able to explain the setback we have been experiencing in my walking to the professor’s assistant. She examined me briefly and told us she that was going to come back with the professor. As soon as she had left the room, the pediatrician entered who also briefly examined me. By then it was noon and I was really getting hungry. Luckily my mom had brought yogurt and I was able to eat so that I didn’t become too grumpy.

By half past twelve we finally got to see the professor. As always the man was delightful. Sometimes it’s like he is the only one, besides my parents and my brother, who really understands me. Mom explained the problem with my walking again and said that she thought it was the metal, that has been displaced in my legs, that caused me to fall back on the walking. The professor thoroughly examined me. He felt my legs and my feet and moved them around in all possible directions. He explained that it was clear to him that the metal wasn’t bothering me but that the muscles and tendons around my ankles were causing the real problem. They had shrunk again which caused me to turn my feet outwards again, just as they did before my operation last year. The only way to extend them again was by putting me in casts, stretching my tendons in a fixed position.

The orthopedic professor explaining to mom and me what he is going to do
Taking my measurement for the new standing apparatus

We had also brought my brand new orthopedic shoes and my leg braces for him to look at. The leg braced are also quite new but they really didn’t fit well. Luckily the company that makes these also has a room in the children’s hospital so we could get them to come in to take notes on the modifications that are needed according to the professor. He also recommended to make me a new standing apparatus. Mine is currently four year old and can no longer be modified to fit me since I’ve grown so much these past few months. Measurements were taken of my entire body so that this new contraption can be made to fit me. The nice people of Vigo, the company that makes this, were quite entertaining when measuring me.

Finally, it was time for my new casts. We went into the castroom and waited for the professor to arrive. Because the special position my feet needed to be fixated into, he wanted to do this personally. The only fun thing about casts is that we get to pick a color or a motif. As Christmas is approaching, they had a ‘season special’ which my parents obviously chose for me.

Putting the casts on was quite the challenge for the professor as I was struggling to get out of this uncomfortable position. Luckily my dad had my favorite soothing music on his phone which helped me to calm down and to stop resisting. For those wondering, it’s Spanish Romance by Milos – I love the gentle sound of his guitar and the violins in the back.

It took 6 hands to put on the new casts
I'm happy with the result - my new Christmas casts for the next two weeks!

By the time the professor and his cast assistant were ready, it was half past two in the afternoon. We wrapped up the paperwork and set a new appointment in two weeks time to come back to take of the casts and evaluate. By then my orthopedic leg braces should also be fixed and hopefully, I’ll be able to use those as of then instead of getting new casts again.


The long walk back to the car I got to ride in a wheelchair… no more horseback riding on my mother’s back – I’m sure my dad won’t forget my stroller next time we go to the hospital – once bitten, twice shy!


About two hours later I was back home. What a day it had been. My brother had taken the train back home from his exam which, by the way, he did very well. So all’s well that ends well and although getting these new casts seems like a set-back, it’s going to help me to leap ahead in the long run, or as they say beautifully in french “About two hours later I was back home. What a day it had been. My brother had taken the train back home from his exam which, by the way, he did very well. So all’s well that ends well and although getting these new casts seems like a set-back, it’s going to help me to leap ahead in the long run, or as they say beautifully in french “parfois il faut reculer pour mieux sauter” which means “sometimes you need to take a step back so that you can leap ahead”.


Hope you enjoyed this weeks post and stay tuned for more!


Have a great weekend!


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