Riley and I today we are enjoying the day inside..
As everyone know Riley is still battling Niemann Pick
Type A. His road is alot harder then
when we first found out that he
had it.. He is now 22 months old and he has made
a big difference in our life.
We are so blessed that we still have him here
in are life..
him and just break down and cry.. I know i do it everytime
i get to hold him in my arms. Riley is still having alot of
trouble breathing and they had to move him up
on his oxygen to 4 liters at night on his by-pap
and 3 liters during the day and it helps more with him
but you can still see him frighting to breath..
Riley's liver and spleen bigger and they said
that riley will be in more pain and fussy but
it is just another sign of the disease.
His feet are swollen and will conitune
to swell due to the disease..
so we have seen more things
happen with Riley then
before. Riley sleep's alot more
and he cry's pretty much all the
It is so hard to help riley when he really
cant tell you what it is but
we do everything we can to just
comfort him and love on him
as much as possible.
My heart hurt so bad see
my baby go through this
and to think wow this is
what he should be doing it really
kill's me. Riley is so strong
and I do thank God everyday
for him but sometimes
I just wish this was a
Riley is my whole family and with out
him It will not be the same..
Riley is always in so much pain
that I just sit and cry because i
have done all i can do to help him
and so we Pray.. Riley is having
a really rough time right now
and it is so hard to not give up at the
point in my life..
I know that it is easy said then do but
I am a human and that is how i
feel.. I am not giving up i just
wish things were different with him..