March 15, 2012

Nathan's Feeding: We went to the feeding clinic at Children's two
weeks ago and a team of four people (Ped., OT, PT, and Dietician)
watched him eat and talked to us for about an hour.  After that, they
all left and met to discuss their recommendations for Nathan.  They
said he does have severe acid reflux and they are not sure what else
is going on.  They had me stop giving him breast milk and all solid
foods.  He is on a hypoallergenic formula for now.  I am still pumping
twice a day, but that ship has sailed. They
follow up with us every 5 days to see how things are going.  This team
is AMAZING!!!  He is throwing up a little less than he was, but seems
much more content.  They also switched his medication.  It is hard to
say what is working and what is not, but we are just going to keep
trying different things until he stops throwing up and continues to
gain weight.

In other news with Nathan:  We got some bad news on Monday.  Nathan
was diagnosed with Brachial Plexus which is a torn nerve from his left
ear to his shoulder.  It happened during his delivery.  They usually
diagnose this at birth or three months, but no one really tested for
it until we pointed it out.  We have noticed that he does not use his
left arm, but we thought it was just associated with the Torticollis.
After a month of therapy and closer examination of the arm, they
determined that he has a full Brachial Plexus tear.  We met with a
team on doctors on Monday (Neurosurgeon, Plastic Surgeon, and Physical
Therapist) who evaluated him.  There is actually a Brachial Plexus
clinic at Children's and they will follow and treat Nathan as a team
which is absolutely amazing.  Basically what this means is that over
the next three months we will hope and pray that Nathan starts to
regain some movement in the shoulder...it is HIGHLY unlikely that he
will at this point.  If we don't see improvement then they will need
to operate in July.  They will remove a nerve from his leg and replace
the torn nerve in the shoulder.  It is a 4-6 hour surgery with a 3-6
month recovery period.  He will lose all movement and function in that
arm for about two months and then he will slowly gain it back.  The
bad news is that even after the surgery, he will most likely never
gain full function back in his left arm.  If it is successful, he will
be able to move the arm and do most things that do not involve lifting
his arm above his shoulder.  When we asked if he will be able to swing
a bat or golf club they said that there is no way to tell if he will
be able to do those things.  Kids are extremely resilient and we just
have to have faith that he will be strong and surprise us all with
what he will be able to do.  There is still a slim chance that he
could start to regain movement in the arm over the next several
months.  That is why they are going to wait as opposed to operating
now.  I just have to stay positive and take one step at a time.

Most of my days are filled with physical therapy appointments, meeting
with doctors, and going through red tape on the phone with the
offices.  It is a good thing that I did not go back to work, because I
would have never been able to do it with the amount of time and
appointments we go to. He is a very happy little guy and is already
amazing us with his ability to adapt.