TYLER B. - MOEBIUS 'WARRIOR'
Hi, my name is Denise and I am really enjoying your web site. I think this
will be a great reference for many of us.
Our story is a long one, so first I'll tell you our current situation and
then try to fill you in on how we got to this point.
Our son Tyler has moebius syndrome. He was diagnosed at about 2 weeks of
age. Almost all of Tyler's cranial nerves are involved. He breathes
through a tracheostomy, and is on a ventilator at night time. He is j-tube
fed. He is also as active as any other two and a half year old. He is very
bright, and quick to catch on. He is very very very social, and loves
constant interaction, and is quite the entertainer.He began walking without
any assistance at 31 months of age after many months of 'cruising' with
assistance. The two months since he 'let go' he has progressed daily to
come
close to the physical abilities of other children his age.
As far as living day to day with moebius...
Tyler is very quick to share his emotions through body language, huffs and
puffs, sign language and making faces(this is done with fingers in the
mouth
to pull funny faces)
Communication for Tyler does frustrate him at times, we are all learning
to
sign together. Often Ty will remember the new signs when we cannot!
Currently our biggest concerns involve Tyler's eyes. He doesn't blink, and
they are open while he sleeps. We apply lacrilube ointment every couple of
hours, and so far this is keeping his eyes moist and healthy.
To those meeting Tyler the first thing noted is Tyler's open mouth, and
constant drooling. He wears a bib, and carries his 'spit cloth' which he
is
pretty good at using when reminded. The most common remark is about his
bright, beautiful, blue eyes!!
This is a pretty choppy 'this and that' but hopefully provides the basics
of
our life with moebius.
I would like to have our email available to anyone, especially involving
questions of feeds, trachs, and doctors' prognosis concerns.
That will be my next story (it's a long one) of how a premature baby was
given pretty much no hope, and then fought through 15 months of ....that
will be the next story!
Denise.Bartlett@cvihr.bc.ca
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