Back again

January 25th : Heinrich's week for operation, and Taylor's Spatial Frame attached....
Epidural onso has no pain, physio visits daily, pin site cleaning, medication, cathater.....
Spent 10 days in hospital -
Had to go back to work - so at home with Miss Ani, who is too sick to go to school - bad relapse...

Every day is cleaning, sponge bathing...
First infection - ok, but just a shock to see, and made me quite worried...but hospital team excellent.

Sometimes he was in pain, sometimes depressed, sometimes just ok.
Then he got better with the frame on - more confident, and then able to walk with no crutches.
Leg lengthened ok, but had to changes strut turns because of hitting a nerve.
In August the frame came off, and we put on a spica cast. Wow - hottest time of year, itching like crazy, back on crutches, and every complaint possible was present - thank goodness for KM.

3 weeks of spica cast... wow.... good that no cleaning, but this was a different experience.
September 7, 2009 : cast off, ROM leg brace on. It's ok, but sometimes gets sweaty. It also slips down. We broke another pair of crutches - now onto our 3rd pair since February! Many thanks Helen: takes him in the hydro pool, and has this special nack with this little boy.

So Monday is 8 weeks of ROM brace, so we are back at specialist.
I am exhausted from this first lengthening, but he has no shoe rise now, and hopefully he will be better off.
I do, though, anticipate a time when we will be back with shoe rise, and ankle/tendon problems - but I do have to stop anticipating and worrying about these things and just focus on today.

They did lengthen 5 cm using the Frame. That's a positive! But why do people on the website opt for lengthening against amputation. Removing a body part does sound terrible, but when the body part is such that life for the child would be better if it was removed... I just don't think that people realize that lengthening isn't just a surgery - where the doctor goes in lengthens the leg, and you come back out again honky-dory. We have been 9 months in this process: weekly hospital visits, xrays, infections, antibiotics, pin site cleaning, physio, strut turning, twinges... hope it ends soon...

Just a thought

I haven't posted for a while...
Not much changes
We have a grasshopper on the roof

Puppy has yet again destroyed the fence - had to try chicken wire....

Miss Anorexia is going through a new stage.
Seems that she had control, and then lost it.
So we had control, and put all limits in place, and she has done fab job of restoring weight - but now we go through this next stage, and she has it back...

So what do we do so that she doesn't lose control, so that Anorexia doesn't place her body as it once did....

I wish I knew more about Anorexia's mind, about it's thoughts, - maybe we do need to try something - am not sure if prayer is enough to remove it

Decision

To lengthen or amputate.
I think people think I have gone crazy.

No question - lengthen thigh bone. - September 2008

Then what?
Either 3 operations to lengthen lower leg, and then shorten good leg, and fix tarsal, and valgus, and whatever complications decide to occur during this time, and then of course possibility that it doesn't all go as we want and end up removing it.

Or just forget about lengthening lower leg and just remove it.

Easy decision?
Why?
He won't have to have lots of procedures.
Everyone I read about with prothetic has done really well.
Will give him the best of his young life - enjoy childhood with no further operations.

Oh - Mr K fractured wrist. Thanks Mr K.
He started last series :
Mr K in October 2004 - fell out of tree he had been climbing - fractured arm
Mr H in February 2005 - pushed over at school - fracture fibula - fibula hemimelia worsened
Mr A in May 2005 - climbing monkey rope at zoo - let go too soon - fractured elbow
Ms R in August 2005 - roller blading with uncle - fractured wrist.

So here we go again
Mr K in February 2008 - flipped off friends bike when hit a bump - fractured wrist

Haven't posted for a week - wow.
Was a different week also. I think I am starting to take control and then something will happen to bring me down from my pedal stool and remind me that I'm really still not on to it.

H's new teacher has read up on fibular hemimelia. Is first teacher ever, and is soooo good. Is best thing that ever happened.

Am being lazy. Have mountains of work to do, but computer is it...

...

It's been an interesting few days.
I was reading someone's blog, and it was so good.
The x's girl is performing cry-baby acts, and is getting a bit sad....
All the children are on cloud nine - though 2 more starting back at school tomorrow...

My ankles are swelling. Wish I knew why. I've been exercising and drinking lots of water,
but just seems strange. Maybe I go to the doctor. I think I make a family appointment
as I have to check out H's warts and his cut from yesterday's accident, and also his tiredness.
Also have to get A's tooth look at. H and A were being silly, and A had bandage in his mouth.
H pulled one end, and pulled and pulled it, and the top teeth of A came out....

If all the powers who could be
became a power
then would we need electricity?

Amputation vs leg lengthening

Am starting to question the point of lengthening the leg.

As I gather - if we chose amputation - it would be a fairly straight forward procedure,
and then the prothesis - slight chance of infection - but generally an emotional struggle more than a physical one. Valgus is gone. Tarsal coalition is gone.

If we continue with leg-lengthening - we lengthen thigh bone now 3.5cm. Then we have to wait a year for the lower leg to straighten - or will look at correcting the valgus first. We also have to correct the tarsal. Then we lengthen the lower leg 10cm. We can only realistically find 5cm. So following this we have to shorten the good leg 4cm. We can have other complications during the procedure, and from what I have read, with such a length to find - often the patient ends up with an amputation. So why go through all of this to have to amputate in the end anyway?

So what is the answer?

Lift off

I was reading someone's blog today, and wow this woman is amazing.
She just has so much positivity about everything.

I started a new book today - so much to housework...
It's just got so much dimension to it.
And it's a full moon.

What a day.
Teenies had fun in Wellinton
'K' had fun with friend
Me? was neat day with everyone else.

Teenies going to Australia tomorrow - is going to be relaxation time....