Thursday, August 30, 2012

CANT BELIEVE

IT'S BEEN ALMOST TWO YEARS SINCE WE RECEIVED
 RILEY'S DIAGNOSIS OF NIEMANN PICK TYPE A..

IT'S BEEN ALMOST TWO YRS THAT OUR WORLD
GOT TURNED UPSIDE DOWN.
AND THAT OUR HOPES AND DREAMS
FOR OUR SON AND FOR OUR FAMILY
WERE TAKEN AWAY FROM US.

 THESE TWO YRS HAS BEEN THE HARDEST IN A LONG TIME
BECAUSE OUR HEARTS WERE PRACTICALLY CRUSHED IN A
MILLION PIECES KNOWING THAT WE WOULD ONE=DAY HAVE
TO FACE THE LOSS OF OUR PRECIOUS LITTLE BOY BUT NOT ONLY THAT
BUT WHAT HE HAS TO ENDURE THE PAIN AND SUFFERING FROM THIS DISEASE
AND ALSO FOR MY FAMILY AND FOR RILEY'S BIG BROTHER TO HAVE TO GO THROUGH THIS IS SO DEVASTATING.. I AS A MOM CAN NOT EXPRESS HOW WE FEEL AS A MOM TO LOSE YOUR CHILD AND THEN TO TELL YOUR OTHER CHILD THAT HE IS NOT HERE IS HEART BREAKING ...

 THERE ARE TIMES WERE I FEEL VERY WEAK AND JUST WANT TO CRY AND SAY WHY US AGAIN BUT I KNOW THAT IT IS LIFE AND I WANT KNOW THE REASON WHY WE ARE GOING THROUGH IT AGAIN BUT I DO THANK GOD EVERYDAY FOR HAVING MY BOYS AND EVEN THO IT IS A ROUGH LIFE WITH RILEY I WOULDNT CHANGE IT IN THE WORLD...

UP DATES

RILEY IS DOING GOOD, HE IS GROWING SO MUCH... HE IS STILL
AMAZING ME AND THE THINGS HE IS DOING.. WE ARE VERY THANKFUL
FOR HIM STILL..RILEY IS A STRONG FIGHTER THAT IS FOR SURE.. I MEAN YES
HE IS STILL GOING DOWN HILL WITH A LOT OF THINGS BUT HEY HE IS STILL
HERE AND THAT IS WHAT  COUNTS TO US... YES RILEY IS STILL HAVING BREATHING
TROUBLE AND HIGH BLOOD PRESSURE, HE STILL IS HAVING SEIZURES, HE HAS NO
HEAD CONTROL AT ALL OR HE CANT HOLD HIS ARMS UP  ANYMORE, HIS BELLY IS MUCH BIGGER, HE CANT REALLY SIT IN HIS CHAIR MUCH ANYMORE OR HIS CAR SEAT BUT WE STILL SIT HIM IN THE CHAIR BUT NOT FOR VERY LONG..RILEY STILL CAN COO AND SMILE... HE STILL IS HAVING A WEIGHT GAIN PROBLEM STILL BUT IT IS GETTING A LITTLE BETTER...ARE ROAD IT VERY HARD AND I AM ALWAYS STRESSED OUT BC OF EVERYTHING GOING ON IN OUR LIFE.. I AM ALWAYS BUSY WITH RILEY AND MY 5YR OLD AND IT IS VERY HARD BUT I DO MANAGE... I DON'T SLEEP VERY MUCH BC I AM UP WITH RILEY BUT I WOULDN'T CHANGE IT IN THE WORLD BC I KNOW MY FAMILY AND I ARE VERY BLESSED...RILEY WILL BE TWO IN SEPT 15 AND WE CANT BELIEVE IT AND HOW FAST IT HAS WENT BY.... I AM VERY THANKFUL THAT RILEY IS MAKING IT TO HIS 2ND BIRHTDAY BC WE WERE SURE FOR A WHILE IF HE WOULD OR NOT BUT WE HAVE FAITH .... BUT I WILL POST MORE LATER ON HOW RILEY IS.....

one very happy mommy :)

I cried and cried bc i got my
wish and it was that i
could just snuggle
with riley and let
him fell asleep
on me and it
came true..
 the best feeling in the world
to be able to hold him
for  a while..
it melted my heart
away and all i
could do was
to just cry and
say thank you
Jesus...
 
 
 

Friday, August 17, 2012

Nana and Papaw time

                                                    Riley love water... My parents came down to visit and to
check on everyone, and they stand at comfort inn with a indoor pool so we all got together
as a family and went swimming..


                                                        This is me Riley and my Dad and my niece Cristen
who is one week apart from Riley.. Riley had a great day there in the pool.. it was cool but not to cool it was just right for him.. I loved every second of it and of holding him..


This everyone that came that day ... Riley have a blast with his brother in the pool... he keep looking at Little Chris and you could see a little smile on his face.. this day maybe everyone day to see Riley so happy...
         Riley has been doing okay, you can still see were he is going down hill alot more but i am thankful everyday that he is still here with us... I still get to talk to him and hold him... I still can say that God is awesome... I thank everyone for praying for him and my family and still continue to pray for us and for Riley ... Riley is  a blessing and we are amazed at how he is still here and how he can still do some little things to melt your heart away...

Thursday, August 9, 2012

COLD


 So my sweet Riley bug has had a cold for two weeks know
and it has and still is very rough on my
sweet boy.. these pictures i took while
holding him in my arms.
he just woke up and so i got my
mommy time with him.


I got to hold Riley today not for every long
but i love every second of it.. Riley is my  
Angel, even tho this cold is making
Riley have alot more
trouble breathing and his heart
rate is crazy he is
still strong as ever..
                                                                   
video

Still made my day more beautiful
then ever. Melts my
heart away when i get to
hear his sweet vocie..