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My Operation

  • Posted on July 16, 2012 at 11:35 am
[Originally posted Jan 2012]

Well it’s been a while since we’ve managed to get some updates out but things are now starting to get back to somewhere near “normal” again….if there is such a thing.

Surgery

On 15 Oct 2011 Maddie went into surgery for a Bilateral Osteotomy, PSOAS muscle release and hamstring release.  In plain terms she had her thigh bones and hip joints reset to straighten her legs and ensure her hip joints were engaged fully so they continued to develop properly and not dislocate.  The PSOAS muscle release is lengthening of the muscles over the front of the hips, with the adjustment in the osteotomy she only needed one hamstring lengthened but also needed one adductor to be lengthened in her groin for a 2nd time.

She was in surgery for about 4 hours and took a little while to get out of the recovery ward but thankfully wasn’t in pain thanks to the pain killers.  The week in hospital was long but we were lucky to have great nurses looking after her.  She also got to enjoy a couple of visits from Captain Starlight, who had us all in stitches, and some special friends visiting later in the week when she was up to it.  Needless to say she was spoilt with gifts and well wishes and we managed to have a bit of fun along the way.

She came home with a little more “hardware” and bracing than she went in with and what she affectionately calls “The Limo”.  She now has a plate at the top of each thigh bone with seven screws of varying lengths to hold the plate in place.  The “Limo” is a wheelchair that has leg extensions, and extension for her head to rest on, the back rest will almost go back flat and the whole seat can tilt back if needed.

With some of my pressie’s

 

Hey! Who’s the patient here?

5 days on and still smiling

 

 

 

 

 

 

 

 

 

 

Recovery

With Maddie not being able to sit or put any weight on her legs or hips we hired a hospital style bed that was adjustable allowing her to change positions.  This meant that the new room downstairs became Maddie’s bedroom until after Christmas with Mum and Dad alternating who slept on the spare mattress next to her.  Naturally Maddie was quite uncomfortable from the wounds and needed to move frequently in addition to the regular medication so there wasn’t a lot of sleep to be had.

Due to the number and size of the dressings she went back into day surgery two weeks after the operation to have them removed.  While she was under anesthetic the surgeon was able to test the range of movement she now had compared to what she had prior to the operation, doing this while she was awake would have been very painful.  She also had casts taken of her legs for the braces to be made that she would wear while everything healed.

Even in this short time she was showing a huge improvement so it was back home for more days being horizontal.  Now that her wounds had healed she was now allowed to get in the pool as it gave her the opportunity to move and use her muscles without the weight bearing.  However with the strange weather we had during Nov-Dec we only had a couple of opportunities to get her in as the water was just too cold.

At 6 weeks we were back to the specialist for a review and again he was happy with Maddie’s progress which meant we were now off to physio, with strict instructions that there was to be no time on tummy yet.  However one thing that had changed since the operation was an increase in her “jumpiness”.  She’s always had it and severity varies depending on a number of factors however now she was jumping at every noise no matter how loud and each time it was hurting her.  It has now almost returned to the way it was but we’re now on a waiting list to see a neurologist to try and determine what options there are to help reduce this.  Maddie’s goal is to be able to walk which was the whole point of the surgery but we’re going to need to control this startle or it’s going to restrict her ability to move freely.  Even prior to the operation when she was standing her legs would just suddenly give way for no reason or when there was a sudden noise.  You can imagine the consequences if she’s in a walking frame and can’t control it.  It also affects her fine motor skills and independence, trying to eat or write can be frustrating so we’re really hoping to find a way to improve it.

Rehabilitation

On 30 Nov we had our first physio session with Melissa where we set a plan to get Maddie back on her feet and strong again.  Luckily for us we met Nick at this appointment.  Nick was a 4th year uni student doing his final placement and under Melissa’s supervision Nick took Maddie through her program almost daily up to Christmas.  This really helped get Maddie back on track and she really tried hard during these sessions.  About this time her sleeping at night started to improve and she was needing us to move her less as she regained strength….being exhausted helped too!  It wasn’t until we got the OK for her to get back on her bike that we all realized just how much strength she had lost, she was hardly able to turn the pedals.

We then fitted in hydrotherapy sessions weekly until just before school went back in between physio appointments, exercises at home and we’ve loaned a standing frame from the Cerebral Palsy League to give her time on her feet in the best posture possible.   She’s also got special AFO boots to make her legs go straight when she stands which she wears almost all the time now.  We still use the leg braces as often as we can get her to lay down or sit in the Limo with her legs out.

Our last appointment with the surgeon confirmed her bones had healed and she was progressing really well.  We knew it was going to be a long road but when he said that the hard work now starts we couldn’t help but wonder how much harder it was going to get.

Maddie’s now back at school and the first couple of days were a little challenging for her due to the time she spends sitting.  The school is working on obtaining a standing frame for her to use during the day to allow her to get straight but until then she can lay down on a mattress for a while during some subjects.

Overall Maddie is doing really well, the work she put in during her gym sessions prior to surgery are really paying off now.  The challenge for her is to now maintaining and increasing the work she has been doing whilst keeping up her nutrition and rest.  All of this on top of being a girl of almost 14 years of age, needless to say we all certainly know we’re alive.

We’re Back Online!

  • Posted on July 6, 2012 at 10:06 am

After what seems like a very long time and after a good deal of frustration we’re finally back online.

Please bear with us while we get the site back up to date and although we lost of lot of the content there is some we can get back on but this is all manually done.

We’ll also be learning a little about the design as there are a few changes we’d like to make so things may look a little different now and then as we experiment.

A big thankyou to Cinta from mydesigner.com.au who helped make this happen.