case of Early Intervention
kept William alive during the first three months of his life. That
machine, ironically, caused irreparable
damage to the very organ it was designed to help: the lungs. While
that damage will never be corrected, William can grow new lungs.
The only way to grow new lungs is through nutrition. But, William's
oxygen requirements and high respirations caused by his lung disease
makes oral feeding impossible. So, we have to feed him through a
tube placed in his stomach. His feeding issues are further complicated
by reflux which causes him to throw up about half of his feeds.
tube feeding doesn't help William overcome his oral aversion caused
by the respirator which kept his mouth and throat open for 3.5 months.
We have to be very careful in introducing oral stimulation so as
to not create more aversion.
the consistent help of Easter Seals, 30-months later William is
now eating three servings of yogurt or food pureed to a yogurt consistency.
He is still fed via g-tube to compensate for the lack of volume
and nutrition, but Easter Seals has been instrumental in getting
him to come this far.
In addition to the feed and grow issues, William is at least four
months delayed developmentally. That means, at 10-months old he
had yet to roll over, could not sit without assistance, and could
not hold his head up. At
30-months old, William is still very weak, has trouble with fine-motor
skills, and walks with hesitance. The strides he has made in the
past two years are phenomenal thanks to Easter Seals, his doctors
and nurses. William has a bright future ahead of him and the incredible
can-do attitude to ensure that future materializes.
William looks like a normal 30-month-old.
Because of his lungs, his feeding issues and his developmental delay,
we can't treat William like a normal infant. There are issues we
never even considered - like gag reflexes and how to push his back
; stimulating his senses because his sense of smell, for example,
is hampered by his long history on the respirator and then more
than a year with a nasal canula; strengthening his muscles and working
with low muscle tone; encouraging him to eat and put textured food
in his mouth; preventing him from throwing up his food. Only experts
can teach us how to help our son and not cause further harm.
occupational and speech therapists from Easter Seals, his doctors
at Dartmouth, and feed and swallow experts from the Bureau of Medical
Services. The experts are complimented by William's daytime nursing
care. The nurses are instrumental in providing therapy and taking
advantage of the tiny windows of opportunity William affords us
to try new things.
SHOULD THEY HELP
If William didn't receive and continue to receive early intervention,
his problems would only compound. He would have been slow to wean
from the oxygen. It would take much longer to teach him to eat orally
and so the g-tube would continue to complicate his development.
He needs nursing care as long as he has a g-tube and can't go to
a normal day care.
William doesn't continue to receive early intervention, I can only
imagine the complications he'll suffer. Feeding issues into school-age
that will require continued therapy at the cost of the school. Developmental
issues into school-age that will create further financial drain
on his school. The financial aspect is minor compared to the unnecessary
hardships he will suffer.
is in the best interest of our family, our community and our tax
dollars that William (and other babies like him) are afforded the
best possible care while they are still able to make a difference.