I can't exactly relate to your Zak but my 7 year old Gil seems a
little like him. Gil was born slightly premature at 33 weeks and has
a diagnosis of Myotonic Dystrophy. We adopted him at age 5. Until
that time he had extremely poor care and spent most of his time in a
crib or stroller. He also spent the first year of his life in the
hospital due to poor respiratory status and was "coded" 3 times. So,
it's hard to say where his issues come from (not that it would change
anything). Gil's Myotonic Dystrophy causes generalized weakness,
however he to points his toes so hard that the AFO's don't always
work. He also uses a posterior walker for short distances but has a
wheelchair for longer distances. He usually scoots on his bottom to
get around but is beginning to crawl. Over the past 2 years we have
been able to slowly build up his strength in his arms and legs. He
is just starting stairs and we are working on squating but it truly
is at a snails pace. Gil tends to stiffen when he is upset or
excited. This would cause him to fall backwards 2 years ago but he
has gotten better and now leans forward when he does it. Gil also
has a diagnosis of Autism and this behavior for now is being
attributed to that. Gil is also non-verbal and 100% g-tube fed.
Everything happens slow but he is coming along. Be patient and keep
working at it.

--- In cerebralpalsy@yahoogroups.com, "Sarah" <matthew_krug@...>
wrote:
>
> Hi, my son Zak is 3 years old and due to a very traumatic birth he
has
> cerebral palsy and a brachial plexus injury~ but he's the cutest,
> sweetest little boy :)
> I follow the yahoo groups closely but don't always have a chance to
> type ( I have a 22 month old who likes to "help" and I'm busy with
> Zak... you know how it is). We'll I think the professionals have
> decided Zak has Athetoid and/or mixed CP and I know every person is
> different but I was looking to relate to someone about something :)
> Zak has flexuating tone, sometimes he stiffens up and other times he
> has trouble supporting himself, he uses a (kaye reverse) walker and
> AFOs and does pretty well, most of his walking issues seem to be
> balance and stamina issues. He points his toes hard and AFO's barely
> correct it when he's excited, but he doesn't have much spastisity~ i
> don't think. Zak can sit in a long sit and pivit and/or scootch
> around, sometimes, but other times he rockets out of it (like he's
> falling or extremely uncomfortable). Zak really didn't have any
> balance reflexes until recently and now they seem to be minimal and
> more learned. Zak uses sign language to communicate, but does have a
> few "m" and "b" sounds and we just weaned him off 100% tube feedings
> less than a year ago~ eating is still a bit of a work out for him.
Zak
> is smart, but over 50% delayed in all physical areas, and his left
arm
> has a brachial plexus injury and is partially paraylized and the
> muscles are tight.
> Ok i'm done rambling... can anyone relate to Zak? I do better when I
> understand things and can relate to other situations.
> thanks
> Sarah
>