Several people have contacted asking why no
update to the blog for a while, in truth there has been very little change or
events over the last couple of weeks with Robbie.
After the initial teething problems at
school, the dust seems to be beginning to settle and a stable routine seems to
be helping to calm the waters both at home and in life in general.
Other than his routine 3 monthly visit to
the Orthopedic consultant there has been no medical contact from the health
service whatsoever, despite me contacting his specialists secretary at the Sick
Kids last week, and asking if he was to see Robbie again soon there still has
been no call forthcoming to either confirm or advise (Note to self – maybe try
calling again today)
Robbie has taken a growth spurt during the
summer months, not only highlighted by the ever shrinking hemline on his
trousers, but also confirmed by the Pediatric Orthopedic Consultant who has
advised his orthotic splint is becoming a bit short in the leg, and there are
some slight signs of marking on his leg when this is worn for any period of
time. Thus a trip to the Orthotic clinic is to be arranged in the next week or
so to have a new splint arranged.
In relation to his Dystonia, there have
been more and more reports of falling at school, and even around the house he
seems a bit more clumsy and prone to falling over, however he just picks
himself up, shakes himself down and get on with it, the only positive slant on
this is he seems to have developed a great “save” response when falling!, and
very seldom hurts himself as much as he used to. There seems to be greater dystonic
tightness in his foot, and this may well be the reason for the new unsteadiness
he has developed.
In relation to school, and his mental work,
he seems quite tired at the end of the day, he doesn’t seem to be enjoying
school as much as he did in Primary 1 and again this seems to be tied in with
the muscle spasms in his hand giving him lots of trouble whilst trying to grip
a pen and write, he also complains a bit more in relation to sore hands, legs
and back… In general there does seem to be slight progression of the dystonia,
and November and his DBS implant still seem so far away, even worse we still
have not had official notification of the appointment for this to happen, and
you cannot help but stress and worry in case this appointment is going to fall
through, and he is going to have to wait longer for his treatment.
Some may think I am wishing my life away
looking so forward to November and the DBS, but I want this for my child, I
want his pain to cease, or at least decline, I want to see him being a bit more
able to do things… I want to see that happy little guy again on a more regular
basis, I simply want what I know is best for my Son.
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