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Introduction

On June 2 of 2022, Charlie had a Selective Dorsal Rhizotomy. Since there are a bunch of articles about what that is, I am not going to spend time trying to paraphrase them for this. I will just say that it is a surgery on the spine performed with the intention that it will improve communication between his brain, spine and muscles by going into his spine and cutting sensory nerve fibers.  The recovery is in-patient rehabilitation for several weeks. Back when Charlie and Henry were born, we did a blog to keep people updated and it helped give me (David, Charlie's dad) something to occupy my mind and has since been a helpful source of memories of that time. So, I decided to write a blog about this experience. The hospital is Texas Children's Hospital in the Medical Center in Houston, Texas. For those that know that hospital: Surgery was in Legacy Tower then we moved over to West Tower.

Day 41: Welcome Home Charlie

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He made it! Day 41 was his last day in the hospital. The first thing Charlie said in the morning was "am I going home today?" We had breakfast and packed. The doctors came round and then put in the discharge order.  Charlie took a walk to the gym to say goodbye to people. Then, at around 10am Aly announced she had arrived and I started running things down to the car.  Aly had decorated the car and Charlie was thrilled to see it. He also got a round of applause from the traffic management team, which he acknowledged regally.  The front of the house was decorated too!  He made a cooking video in the kitchen and got to play with Henry. As did I, which I had been missing. And that's it. That's the story. Except it's not. Charlie has out-patient physical therapy 3 times a week and he still has some way to go getting his strength up.  But the surgery did what it was supposed to do. To truly measure the success will always be a bit difficult for me because so much of i...

Day 40: Escaping the Feds

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FBI! Open up!  I have never, of course, experienced an early morning raid but I assume it feels, at first, like what happened this morning. When I IM'd Aly about our experience, it went like this: David:      The secret police came barging in this morning at 545 and demanded to see our papers Aly:         hi neurosurgery! I get it. They have surgery coming up and doing rounds needs to get fitted in before that part of the day. It's still jarring, though, when someone comes into your room shining lights before you even register where you are. The good news is that the visit was necessary because neurosurgery need to sign off on him getting discharged tomorrow. He was admitted as a neurosurgery patient on Day 1 . The other good news is that, unlike me, Charlie actually managed to go back to sleep after they left. He may have had to roll over to show his incision but I had to get out of bed to close the door.  Part of today's day included a...

Day 39: I'm Going Home on Tuesday

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Charlie slept through the night without incident and, although he didn't have much of an appetite for breakfast, he nibbled on some things.  I should have mentioned yesterday that, when people were checking on him after his throwing up he made a point of telling each person that he was going home on Tuesday. It was never a question. It was never an attempt to begin a conversation about that. It was always just stating a fact that was not up for discussion. This continued when we had our regular visit from the on call doctors. Most of the visits from the doctors that I have participated in since we came to the 12th floor have been something close to courtesy. He doesn't need a daily doctor visit. However, today we had something to talk about. Between us we agreed that there was not a need for a bunch of tests like before . Let's see if he keeps improving. Sundays are for relaxing, after all. Charlie wanted to take his bike for a ride again so we did a few laps of the 3rd fl...

Day 38: It's the Final Saturday

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I hope that giving that title doesn't tempt fate. We have Tuesday in the paperwork and part of his PT session this morning was doing the assessments to confirm he has met his goals. Apparently that includes checking he can get himself up if he falls. I get it that they want to know if he can get up, but pushing my kid over seems rude. Opposite to yesterday , Charlie was almost hyper today. He wanted me to film him so he could make a commercial . He had the idea of the commercial at about 8:45 and the edited version was up on YouTube by 9:15, I think. No post-production worries on this one. We did logos and flags. During the flags, Charlie was telling me that he would prefer it if more countries put their map on their flag like Cyprus and Kosovo do. After a short OT session in the afternoon, Charlie's mood took a bit of a dive. He came back hot and quiet. Then, within a few hours he mentioned that he might need to throw up... then did. All contained and under control but still u...

Day 37: Friday Energy

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The post's title is actually about a distinct lack of energy. Charlie was a bit grumpy and tired this morning. I wasn't much better and had one of those days when everything felt like it needed more effort on my part than normal.  Aly very kindly took a drive into the city to drop off some clean clothes for Charlie and a care package that was mostly for me.  Charlie had his therapy sessions and continued to do well. Following a request from me for some tips about to help him with something, I had 10 minutes with him and his occupational therapist. I was very struck by how very well she knows Charlie already. When I processed that thought I was reminded that I am literally writing a post with title Day 37. Yeah, you get to know someone after 5 weeks.  I have also noticed over the last few days how very popular Charlie is around here. I acknowledge my own bias but, for example, when I said that I thought Charlie was not in a great mood, the answer was an emphatic - "no way,...

Day 36: The Final Lap?

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Charlie has been really good since the surgery at knowing what he's capable of. In fact, he's needed a little encouraging to test himself. I have appreciated his caution. This last few days, he has been so good on his feet and has been on his feet so much in therapy that he has been making moves to do things. It has me a little more on edge. Don't get me wrong, it's great. It's progress. Essential progress. I just don't want him to hurt himself. This morning he was ready to start his therapy - showered dressed etc. - but he was 10 minutes early so we got him comfortable on the sofa and gave him his book to read  his tablet and headphones while I went through to brush my teeth. "Daddy!!" I hadn't heard a thump so I assumed that he had got himself in a position that he couldn't get out of and wanted help fast before he fell. I rushed out, toothpaste in mouth and toothbrush in hand; No. Regular readers may have already guessed. As he was turning o...

Day 35: Wednesday - Getting better and being meta

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Charlie is reading the blog. I feel like if anyone wants to know what people mean when they say "that's meta" people can use the example of me sitting here in this hospital room writing a blog post about Charlie reading a blog about Charlie. It was a really good day here. Our morning routine went very well even though I was on a conference call that started at 8. At 9:30 he walked to his therapy (he had been using his wheelchair but taking his walker and often walking back) and was full of joy each time I saw him. The desk I set up for myself here looks out through the door and I saw him walking by during his physical therapy session and heard him chatting. I wanted to burst out and say hi, like when I went to their school's field day and I was the mascot:  I didn't, though. I sat at my makeshift desk and felt quietly proud. There was a girl that was here who would walk the loop of the floor with her walker a lot. I remember thinking "why is she here if she c...