>
> But Joey's life was not pleasant as much as we tried to make him as happy
=
> and comfortable as possible. The spasticity in his legs was causing his =
> hips to be pulled out of their sockets. Daily stretching was torture for =
> him. Often we would have to pry his legs apart to put a diaper on him. He
=
> was facing several painful orthopedic surgeries to try to correct this =
> problem with guarded long term prognosis.=20


Disclaimer!!!!!
Yvonne this is not about the decison you made about Joey. You did what
needed to be done. Our story has a different outcome ( for the time being
anyways). I'm also not about to start a medical site here comparing Joey and
Alex as each are unique unto themselves. Alex's was a 26 wk preemie. He was
spunky but crashed on day 20. His lungs hemorrhaged and his heart stopped.
It took over 30 min of CPR to get a heart beat back. The neotologist very
strongly advised us to let Alex go then and there with predictions of CP and
severe brain damage. I could not do it, I just could not. I'm sure a lot had
to do with losing Noah to still birth 2 years before that as I didn't think
I could survive the pain ( there has to be a more descriptive phrase than
the pain
of losing a child, it sounds so trite) once again. The doctors were right.
He has spastic quad CP. He has severe brain damage ( basically all of the
white matter in his brain was destroyed) and he has multiple disabilities.
His health history found me having to fight for medical services because
many of his original doctors felt further medical care, much less agresive
medical care was wrong and wasted on a child like Alex. Alex also had severe
reflux. He never kept one meal down until he had fundoplication surgery at
18 mo ( for the medical novices that's a surgery that wraps the top of the
stomach around the lower esphogus to prevent vomiting). It wasn't an easy
recovery and the gtube that was placed at the same time. The gtube literally
saved his life but brought other severe set of problems. He also had a soft
an floppy airway that would collapse when he sucked a bottle.He would stop
breathing.
 His spasticity was such that it also caused hip sublixation. We however
choose to do the orthopedic surgeries.He's had SDR surgery ( they open the
lower spine and cut sensory nerve rootlets that cause the legs to be
spastic) as well as adductor surgery. The SDR was the best thing we ever did
(  he was 4 when he had it done). He has also had several eye surgeries as
well. I have to tell you the surgerical recoveries were  absolute h***. Each
and every time my heart broke watching the suffering as he was recovering
The thought of what in creation have I done to you was broken soundtrack
going through my mind. He did however recover. The results have been
gratifying to see. For Alex it has resulted in less spasticity. It has
resulted in better control over his body and the ability to more fully
participate with the world at large. If you had asked me if I would have
guessed we would be at the point we are now, even 2 years ago, I would have
said no, absolutely impossible. Outside of the cardiac arrest episode a DNR
has not come up again, although it is always in our minds. If I ever have to
make that decision once again I hope I have the courage and the wisdom to
know that it is time, this time to let him go. I also hope that I don't give
up sooner than neccessary because others feel it's time judging by how they
feel his "quality of life is now and might be later.
Joanne