Power was going on and off and missed the movie ...fried my phone , but thankfully
not the computer
I read an article in Wondertime Magazine when I was at school copying stuff...I have to go
back tomorrow and will lift the magazine from the workroom... just leave some of mine in it's place
I looked on Wondertime website and couldn't find the article
It was written by a woman that has two daughters on partially deaf and the other totally deaf...
the younger has cochlear implants on both sides and at 4 or 5 will take them out when she
wants to not hear ... for them it has over all been a good experience
We have a little boy at school that has only part of a brain... one side of his skull is flattened and a
good 2 inches in from other side... he is totally deaf on one side as there are none of the inside
parts of the ear... and little hearing in the other side... his hand movements are jerky and often
flailing about ...so teaching him to sign has been a total failure... he has an implant and although
only makes grunts and no real words it is easier to communicate with him and for him with the implant...
when he first got it he would jerk it off his head , moan and cry when ever it was put on him...
that was in October...
now he will tolerate it longer... when classes change you have to take it off as the noise of kids going to
next class are too much for him...he loves to be outside and if you say
DJ , Door he smiles and tries
to get out of his wheel chair to get to the door... complete sentences confuse him still but
DJ Door and a happy kid are alot better than the unhappy child we had back in the fall that hit himself and bit himself and
cried most of the time... he is in special classes except for recess and music... and has PT three days a week...
before the implant he refused to try to walk and got mad and tried to hit and bite... with it and learning
simple one or two word phrases he is a different child... he is walking 6-8 steps at a time and can get back
up with someone holding his hand
I know his other problems dwarf the deafness... he was sent home to die after birth... the plan was to just
feed him and do no extraordinary things to keep him alive... today he still only takes liquids through a bottle
as he can't manage solids ... but the ability to hear has made such a vast improvement in his life it
is almost unbelieveable... a learn to deal with it attitude , which til he was 6 is what was being done ,didn't
work for him...and now his parents are regretting not doing it sooner ... he won't ever be fully dependent but
he is no longer trapped in a silent world... he loves music and claps and stomps with the beat ... and he
laughs which he didn't do before
My youngest has a lymphatic malformation to the right side of her mouth... it is an over growth of lymphatic
tissue that protrudes into her mouth and makes her look like she has been popped in the mouth all the time ... she
had surgery at 3 and at 5 and at 5-1/2 and at 6-1/2 to remove tissue... the excess was getting bit and infected and
making brushing teeth on that side impossible... she is getting a bit puffy again and will go for evaluation in June ...
people have said we should not put her through it since it is unlikely to kill her... if it starts growing down neck it can
interfere with breathing or swallowing so mainly was done for cosmetics... when she was in kindergarten another child
held her down and pried her mouth open to see why her mouth was like it was and she came home black and blue
and bleeding ... he told her she was stupid and ugly because of her mouth ... if a kindergärtner does this , what would
happen as she got older... kid can be cruel... I forget about it and someone will say to her
What happened to your face ?and I will look to see what happened only to see what to me is my child's normal face...
she was already scheduled for surgery about 3 weeks later ...I marched to school the next morning talked to the
guidance counselor , principal and teacher ... without singling out the child as the bad guy we all talked about people
that were different... then the teacher explained that Sarah had a problem that made her mouth a little fat and was
going to have surgery soon and made it a class project to keep her healthy til then... the little boy ended up driving
her nuts in the process of keeping care of her ... and now as a third grader unless her mouth swells or gets purple
looking people don't notice... and she makes a good indicter of some virus or something like strep getting ready to hit
the class because her face will swell and get a purple look to that side
My point is that sometimes you as a parent have to make choices for your child even if not popular with people
around you ... now at 8 almost 9 we let Sarah say whether she can live with the amount of excess tissue that is
there... last surgery was her choice and after next consult she and doctor will come to some decision.. I will step in
if the growth ever starts going down her neck as this could cause life threatening problems...like lack of breathing ...
and as long as it stays in soft tissue is easily removed and her mouth reshaped ... good thing is that these things
stop growing in about 98% of people after they get past puberty...