I was out grocery shopping recently, and I heard a little boy say to his mum "we in number 12 mum", and the mum replied "we're in aisle number 12 are we? That's good, isn't it? You're a clever boy."
Josh used to tell me what aisle we were in too. I can hear him in my head so clearly.
"We in 7 number, mum".
I know I'll never forget these special memories.
Friday, March 19, 2010
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?
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?
Monday, March 1, 2010
Paint
Love love love! that Joshy gets to experience things at school, such as painting! There is a "communications book" that goes between school and home where the teacher can provide a summary of what happened during the day, or ask questions etc, and vise-versa. This book is covered with a painting Josh did. And he did more painting today... here's some evidence. ;-)
School
Two days after receiving his wheelchair, Josh went to school, came home, and slept, and didn't wake for almost 4 days. He did not have a temperature, and his secretions were minimal, but he just could not be roused from sleep. We decided to send him to school on the Friday anyway, because if anything would wake him, that would, however we received a call before the end of the day, concerned about his erratic breathing and the blue-grey colour of his skin. (He woke briefly when putting him in to the car Friday morning, and when I put him in to the bath on Saturday, trialling a new spa mat I bought).
By the time Josh came back to my place that evening, his breathing seemed better, but because he had not woken, I took him to our GP (recommended by a friend who's son has CP). I'd spoken with Joshy's respiratory doctor the day before, who suggested we commence a broad spectrum antibiotic, which the GP then scripted. That wasn't started til Sunday however, and by Monday evening, when Josh was with me again, he at least had his eyes open. Spiking temperatures then were a concern, however this will always be.
We're not sure what caused this. Sometimes, receiving botox (as he did a few weeks ago), can cause problems, but probably not this length of time afterward. Perhaps he aspirated? Maybe its "just one of those things"?
Thankfully, Wednesday and Friday Josh went to school, alert the whole time, and fast asleep in his car seat within 5 minutes of driving! :-)
And, my clever boy received his first award.
By the time Josh came back to my place that evening, his breathing seemed better, but because he had not woken, I took him to our GP (recommended by a friend who's son has CP). I'd spoken with Joshy's respiratory doctor the day before, who suggested we commence a broad spectrum antibiotic, which the GP then scripted. That wasn't started til Sunday however, and by Monday evening, when Josh was with me again, he at least had his eyes open. Spiking temperatures then were a concern, however this will always be.
We're not sure what caused this. Sometimes, receiving botox (as he did a few weeks ago), can cause problems, but probably not this length of time afterward. Perhaps he aspirated? Maybe its "just one of those things"?
Thankfully, Wednesday and Friday Josh went to school, alert the whole time, and fast asleep in his car seat within 5 minutes of driving! :-)
And, my clever boy received his first award.
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