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I had big plans on keeping this blog well updated but that was before I knew how emotional this journey would be. When dad and Ludvig had left I had to focus on taking care of our other two children and coping the everyday life.

They left early in the morning on Friday, August 9 and arrived to Residence Inn in St Louis late in the evening. Meanwhile all I could do was wait. Yes, I was a wreck. And yes, I cried my eyes out.

On Monday, August 12 it was time for pre-assessment when Ludvig was filmed and the physiotherapists did some measuring to be able to see the changes after operation. They also had a short meeting with Dr Park which ended with Dr Park telling he had to go and write me a message on Facebook. How kind was that?! He obviously understood the feeling of a curious and anxious mother far away.

LudvigandDrPark

Ludvig and Dr Park

Ludvig’s SDR operation was performed on Tuesday, August 13 and it all went fine. All our worries had been in vain, of course. I don’t remember exactly but it was all over in about four hours, from start to end. He slept well during the night.

The next two days (post-op day 1 and 2) Ludvig was not allowed to move, he was turned by nurses in his bed every four hours. Since he was feeling quite sick this was not at all a problem for him. He was vomiting when trying to drink during these days but was still a happy boy when not sleeping or getting turned in bed. He slept well during night and did not have any pain.

On Friday (post-op day 3) he was up in his wheelchair for an hour or two and was able to drink some apple juice without feeling sick to his stomach. The nurses removed his monitoring and his catheter. Until now he had pain medication in his back thru an epidural but this was also removed.

After this Ludvig sometimes woke up in the middle of the night having pain but it was managed with painkillers and he quickly fell asleep again. He also had mild spasms for a few of days after this. He lifted his right leg a couple of centimeters when falling asleep. That’s all. He never noticed it himself wich was a big relief for me since this part had worried me a bit.

On Saturday (post-op day 4) Ludvig was up for physio (PT) one time in the morning and one time in the afternoon. He complained about back pain until he saw a bike and then it was fine. He did three laps and was one happy boy. This day he started to eat again.

On Sunday (post-op day 5) Ludvig had one PT session and was then discharged and allowed to go back to the hotel.

On Monday, August 12 the PT sessions started for real. One hour every day from this day and three weeks onward. (No PT on weekends though.)

Since we don’t want to do any further operations (Percs) Ludvig got cast on Wednesday (post-op day 8) which will be removed after one week. If Ludvig is not able to dorsiflex his foot (move it upwards) then they will do cast again for a week.gips

The first night with cast on was a bit hard for Ludvig, when trying to turn in bed his back hurt since the cast made his feet so heavy. This night he got some Valium to be able to sleep well.

On Thursday, August 22 (post-op day 9) the plaster on Ludvig’s back was removed and the scar looked great and is about 8 centimeters (3 inches) long.

arrWe are very grateful this journey has not been harder on Ludvig so far and to make it even better it would be great if he could dorsiflex before returning home again.

Please keep him in your thoughts and prayers the upcoming weeks.

Thank you.