The Outcome

Our trip to Perth yesterday didn’t have the greatest outcome. 


It was a big day, to Perth and back with Joshua.  Arriving  home, the very sight of my family all waiting, searching my face for a clue as to how it all went, I burst into tears. Big silent group hugs.

I am saddened that this little kid has it so tough. Of course we try our hardest to keep him as healthy and happy as possible, but some things are just out of our control.

Seriously I thought we would go to this appointment, they would look at his feet, um and arr, then tell me to continue with his AFO’s (ankle/foot orthosis) nothing much we can do, blah blah… and maybe update the AFO’s. Fifteen minutes max I thought. The worst I thought, they may suggest surgery to correct them, but highly doubted it as his feet are the way they are because of the muscle tone, not skeletal.

I thought 15 minutes.  That was wrong to start with. We were there for more than 3 hours.

To start with the first Dr wasn’t even really concerned with his feet. This confused me as this was the reason we were there. he looked him over, checking his feet, his ankles, his knees, his legs, his hips. He asked questions about Joshua’s lifestyle. He asked “how he ambulated” and I didn’t know what that meant. What a loser I am. He meant how does he walk. Well… he doesn’t. Never has. He can stand with AFO’s with assistance, but not much else. We don’t stand him, he is just too heavy to support. Mostly he was concerned about his hips. I was unperturbed as the thought never crossed my mind before, but he sent Joshua off for an xray. Not the feet, the hips.

So off we went. In/out of the chair, on the bed, dacks off again. I lost count of how many times he was moved and dacked. No wonder I can hardly walk myself today. Luckily Rachel is on today and I am belted up with my brace, hobbling around.

By the end of the day we were in a room with 4 Doctors. They were  nice, considerate people. The boss Doctor was kind to Joshua, and explained to me what the problems are and how we will need to deal with them. He used many medical terms and large words, then he explained them to me. I saw the x-rays and I understood what they had to do. I listened to why we needed to correct these issues and I realised the pain involved and the recovery time.

His feet at the least of his worries right now, but they will correct them at the same time. His hips are the main concern and almost dislocated already due to his immobility. This is very common in patients like Josh. When this happens he will most certainly have pain for the rest of his life and will not be able to sit in his chair anymore, and would be bedridden. So there is  urgency to have this done soon before it dislocates completely, making it near impossible to fix. We are booked for January, he will be in hospital for 2 weeks, with a recovery time of months.

He will be operated on at 6 sites.

  • Both  feet will have tendons cut, then he will have below knee plaster casts on for 6 weeks.
  • Both  inner thigh tendons will be divided, then wraps and wedges will be used for 6 weeks.
  • Both hips will be de-rotated, to do this they need to cut the upper thigh bones and remove a wedge of bone, turning it, and pins, plates and screws are inserted to hold it in place. The bone that was cut will heal and fill itself with new bone over 6 weeks.

See why I cried?


9 responses to “The Outcome

  1. Oh Tania, I see why you cried as I am now. Keep your chin up. Love to you all. Pat

  2. Tania I am so sorry for you and all that poor little Josh has to go through. Why do such things always happen to the beautiful people in life? It seems that some cop it more than they should ever have to. My thoughts and prayers are with Josh and your family!

  3. Why now?…I dont understand why they didnt tell you this earlier so if possible all this could have been prevented by exercise or weight on his legs, hips and feet to keep his bones stronger and in order??? I can understand why you cried….but surely some expert could have forseen what would happen??

  4. so much to take in, Im suprised you remember half of it, sorry to hear that you have hurt your back again, we are all thinking of you love Rachel xx

  5. I’m speechless. All I can offer (and I realize no comparison) is that I suffered almost no pain a week or so out of my op( and very minimal in that first week). Small consolation, and Josh having way more done, but while the immobility will be incredibly hard, I’m hoping this will not be as painfull as it sounds. I’m guessing your backs will suffer more pain, which is also of concern. All our hugs and kisses, and lets hope the outcome justifys the op. xxx

  6. He was very brave whilst the doc’s stretched and pulled at his legs. Nice of Josh to squeak one out as well – he didn’t have to laugh though.
    Yeah, he’s a heavy little blighter. I’m a bit tender myself.
    We’ll get through it. Our house is always open.

  7. Poor Josh gets the rough end of the stick again…….well it’s got to be done plain and simple and you’ll all get through it with the love and support of those close to you xxx

  8. After talking to you last night ,we feel the frustration of living so far away from you. We concur with Rachel saying that the beautiful people in life seem to have more challenges to deal with than others .But if any people will get through this, it’s you guys.
    You have so much love and support from so many people who love Josh and wish you all the best .
    Love;Dad and Bev

  9. Hi Tan and DH2, got goosebumps reading this…omg, we will talk soon and catch up!! You will get through with love and support from all your beautiful family and friends. we will all be there every step of the way with you and for you all!
    lots love, big hugs xxxxx

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