Friday, June 29, 2012

Riley's Meds


1) Zofran (PRN)

2) Benadryl (PRN)

3) Chloral Dydrate (Twice Day)

4) Miralax (PRN)

5) Normal Saline (Twice Day)

6) Pulmicort (Four Times Day)

7) Trimcinoione (PRN)

8) Keppra (Twice Day)

9) Nasonex ( Four Times Day)

10) Oxygen (daily)

11) Albuterol ( Four Times Day)

             These are just some of the meds Riley has to take I didnt put them all on here but you canget the idea... Riley is amazing little guy who inspires me to keep going and not stop frighting....

Wednesday, June 27, 2012

Trouble Breathing

                                                   Riley is having alot more breathing trouble and here is
                                             how he sounds when he is asleep... Riley is a true blessing to
                                              us and he has come a long ways in his little life...
                                                He has been through so much and still is going through alot.

Sunday, June 24, 2012

Riley is Still here with us..

It has been a while since I have wrote on here
there has been alot going on and
I have been very busy with Riley and
my five year old Chris but anyways
Riley has been doing good, he is having alot
more breathing trouble still,
but we are very blessed that he has made it this

Riley has made a big difference in my Life and
so many other peoples life's.
Riley made it passed the 19 month mark
which was a very scary thing for us
because My Little Girl Faith Robbins
Passed away at 19months
and he did it... Riley is
know 21 months old and will
be two years old

September 15, 2010 and we are so
Proud of him.. Riley has been through a
lot and still is going through
alot but the Lord has
Blessed us in so many
ways and My Family
and I are very thankful.. Riley
is more weak then he has
been and he is fussy all the
Riley sleeps alot but when
he is a wake it is so amazing
Riley doesn't like to be held very
much but when we get a chance we
are so happy and we cherish
very second with him and what
we do with him...

Thank You everyone for all the Prayer
that you do and how Riley has
touch so many of your hearts
It makes me smile to know that
Riley has embraced your
hearts.. Please do still
to continue to keep Riley in
your thoughts and prayers
as he is still battling
Niemann Pick Type A
and we don't know when it
could be his last day here...

Thank you again...

Wednesday, June 13, 2012


Riley is starting to have a lot more breathing trouble and even tho he is on oxygen and a by-pap he is still having trouble... He is making a lot of noises when he is trying to breath... I pray everyday that he gets healed and that God would take all his pain away... I thank God for him and the days that I have with him... Riley is more tried and fussy all the time...But no matter how much pain he is in he still trys to put a smile on his precious face... Riley is a true blessing...Are road will only get harder but I would not change it for the world... Riley is so many peoples Angel and he has changed so many peoples lives it truly is a blessing..
                                       Riley amazes me everyday and how he is so strong and not giving up on us... God is so awesome and we thank him everyday.. Even tho I am hurting because I cant do nothing to help my baby I know God has a wonderful plan for him and for us as a family... There are time were I still don't understand all this but I have Faith and that's what keeps me going... There are times where I just sit and cry and hold Riley and ask (WHY) but i will never know why until i get there to ask him that..
Riley is my everything and so is my Angel who I thank bout everyday
I will one day see my Angel

Lil man is my Hero because when I thought I had nothing
left to live for when my Lil girl received her Angel wings
he came and I had everything to live for... I thank God every
day for him and he is my little miracle and I know that Riley
is my miracle to .....

Sunday, June 10, 2012


Riley is doing pretty good... I love to see this smile. it lights up my whole world... Riley is so strong and even when he isn't feeling so good he always has that beautiful smile on his face... I know it has been a while since I have wrote on here but it has been so crazy these past few months... Riley is having more trouble breathing but he still amazes me... I thank God every day for him and for Riley still begin here with us..

To get to hold Riley is the greatest feeling in the world... Riley is my Life, MY Love, My Everything and he is such a happy baby... He loves his big brother Chris and he laugh at him all the time and to see that it is so amazing... Riley's liver and spleen is still growing and he is still going down hill alot more but I know by the grace of God Riley is still here for me and for everyone else because Riley has a reason here on earth and I am thankful for him everyday

He is my Angel and everyone elses... He looks more and more like his Sister Faith everyday and it is such a blessing to me and my family.. when I see Riley I also see my Little Angel through him and it is so wonderful.... I cherish each day with Riley and little man because you do not know when that day will come.... I do know that just because Riley is sick doesn't mean that my world is gone because I still have him and my little Family and I thank God for that......I know that this Disease Niemann Pick Type A with not bring us down because in the end there will be a cure and we will not stop until there is one ......