Email
Rich and Liz
Harry now 18 months old
and sitting alone
6th
October 2009
Harry is
doing well and is now 18 month old, he sat for over 5
minutes unaided a few weeks back (as photo), and is
getting better weekly he has also achieved some more
communication skills he will touch his hair, ears and
nose on command and also show his tongue on asking.
He also will give plenty of kisses and smiles on seeing
someone he knows. Harry has also achieved feeding
himself finger food although only food that will melt in
his mouth. He has a liking for digestive biscuits.
Harry can
get around the floor by rolling but has not yet come to
grips with crawling although he has found how to
get his boots off and will always get one leg out of his
sleeping suit .
He has
received a chair and a walking frame to help his motor
skills and although it is early days he loves the chair
as he can sit at the table with the rest of the family
and watch the TV. The walker he only received today and
uses it more for standing because once he puts weight on
his legs they don't move but if he is laid down then he
can't keep his legs still. One day he will work out the
stand moves and there will be no stopping him.
Harry's
reflux is well contained with medication and he has
recently had a Mag3 test on his kidneys to see what
action may be required as there is a problem with one of
them with the additional problem of them being joined
together in a horseshoe shape. His feeding is still up
and down but at the moment is doing really well and his
weight is gaining.
He now
attends nursery 3 times a week and seems to enjoy his
time there. One day is at a special nursery and the
other is at a private nursery where he mixes with other
children without disabilities and the mix seems to work
well,
We have a
multi-agency meeting next month with all involved with
Harry and hope to plan his future educational and home
needs. We all believe Harry will hit his
milestones but much later then most, still, no
matter what, he will bring huge happiness and love to
all that he meets.
Email
Rich and Liz
23rd
December 2009
Harry is as
happy as ever and bringing us more joy then ever before,
although he won’t know it’s Christmas he does notice
that something is different because there is a tree in
the house and the outside of the house is all lit up.
Where we are going to put all his presents I don’t know.
Harry is
going into hospital in January to have an operation on
his kidneys hopefully they will be able to save both but
one is not developing as normal and because it is joined
with the other one we hope there will be no
complications.
Harry is now
on his third pair of boots so must be growing faster
than we think but he still has his good and bad days
eating and the little he does eat works off almost
straight away as he still insists on kicking his legs
about when laid on his bed or the floor, he has not
mastered crawling yet but we can see he is trying, he is
however sitting longer.
We have just
made contact with someone in
England for the first time and their daughter is in her
40s, we hope in time we will learn a lot from this
family as their experience will be invaluable to us, and
gives us hope Harry will achieve what their daughter
has.
We will
update this page in the new year when Harry has had his
operation.
Rich & Liz
Email
Rich and Liz
