Saturday, March 6, 2010

Good and Bad

Josh has been sleeping through the night all week!  Yay!  That has not happened in months! Not sure if school is helping him get in to a rhythm and routine, but whatever it is, I'm pleased!

Josh also got another award from school, for "looking when greeted".  The teachers say Josh is using his eyes a lot more, and its as though he recognises their voices now! 

That said, results came back  recently from a ceretec scan (basically a brain scan) which show no changes since his last scan.

During the week I had a rather lengthy and serious discussion with the Doctor we saw a few weeks ago regarding Joshy's legs and his high tone.  Quite honestly, his condition is very serious, and of course makes putting Josh into a car seat or wheelchair extremely difficult, because it is even becoming quite hard to bend him at the hips.  The options are a brace, botox or surgery.

A special brace which encourages bending at the knees will be made and fitted shortly (more detail on that some other 60 seconds).  If we see some improvement using this, we can just continue down that path.  The doctor will put forward his recommendation to use botox, however we have already been met with resistance from the head doctor about our using HBOT in conjunction with botox.  Added to that is that botox can only be administered in the body no less than 3 months apart, preferably 6. Josh last had botox in salivary glands on 5th February, just over a month ago.  Surgery is the absolute last resort, and even then we cant be made to choose this, however the procedure becomes more difficult as time goes on, due to changes in bone structure etc.  There is risk of bleeding especially from the blood vessels etc in the hips, which could then require a blood transfusion.  And, as Ive already mentioned, there are other risks such as being anesthetised, and contracting other infections.  This surgery is also irreversible, so if ever Josh could stand again (let alone walk), he would be unlikely to do so following this procedure.

Its very hard; no one wants their child to suffer.  How do we know what is best? How do I make the right decision?

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