Tuesday, July 31, 2012

Bad Day:)

SO TODAY IS NOT A GREAT DAY FOR ME OR RILEY.. RILEY IS NORMALLY IN A HAPPY MOOD, LIKE TALKING AND SMILE AND MOVING HIS ARMS AROUND.. WELL TODAY HE HAS SLEPT ALL DAY WHICH IS NOT NORMAL FOR HIM AT ALL AND ON TOP OF THAT HE CANT SEEM TO KEEP HIS O2 LEVEL UP WHICH WHEN HE NAPS DURING THE DAY IT IS NORMALLY OKAY LIKE WE DON'T HAVE A LOT OF TROUBLE WITH IT BUT TODAY WE HAVE HAD A LOT OF TROUBLE WITH HIS O2 LEVEL WHICH IS VERY SCARY TO ME .... I TOOK A COUPLE OF PICTURE TO SHOW YOU.. THESE THAT I TOOK AREN'T THAT LOW BUT IT IS LOW FOR HIM....
ON THE LEFT SIDE IS HIS O2 AND RIGHT
SIDE IS HIS HEART RATE.. WHICH HIS
HEART RATE FOR TODAY WAS GREAT
 BUT HIS O2 ISN'T SO GREAT TODAY..


RILEY IS LOVED BY SO MANY
AND I HATE SEE HIM LIKE THIS
IT IS ONE OF THE MOST HARDEST
THINGS A PARENT HAS TO
GO THROUGH TO WATCH THERE
CHILD GO THROUGH THIS
AND YOU CANT DO NOTHING
BUT LOVE ON THEM AND
TELL THEM HOW AWESOME THEY
ARE AND WHAT GREAT IN
INPAMCT THAT MADE ON
YOU AND EVERYONE
ELSE..
RIGHT NOW I AM VERY SCARED TO
DEATH. NOT JUST BECAUSE OF
WANTS HAPPEN WITH
RILEY BUT ALSO
WHAT IS TO COME AFTER
WITH RILEY AND HOW
I AM GOING TO GO ON
WITH MY LIFE WITH
MY FIVE YEAR OLD..
THE ROAD IS ONLY GOING
TO GET HARD BUT BY THE
GRACE OF GOD AND
FAMILY PLUS FRIENDS
I CAN DO THIS ...

Scary Night

So last night was really scary for us as Riley's alarm went off every five Min's... His heart rate was 160 and his oxygen level was between 70 and 75 and it was like he couldn't get it back up and it was at that point were i just cried because i didn't know how to feel or what to do because i did everything for him and it didn't work so i said a little prayer and i didn't sleep but Riley is something else because he is still here with us...I don't know about somethings but I do know that God has a plan for him and everyone and even tho it is very hard to you never know what is to come in our house, the one thing i do know is prayer..Yes it is very hard trying to deal with a five year old and house work and begin a wife plus with everything going on with Riley... Bill's stacking up not know how we are going to do all this but i will just have to pray and God will help me...Riley has no insurance and i know i shouldn't worry about alot of things but i am a human so i do worry.
     Riley is a very strong little guy and he is a very loving little guy and My whole world it complete and sometime i am overwhelm with everything..* SO HAVE YOU EVER THOUGHT OF WHAT IF* I have a lot.. What would lif e be if i had all three of my children... What do we be doing.. Where we would be and so on...


                         

Sunday, July 29, 2012

HOME

RILEY IS A VERY HAPPY BABY AND A LOVING LITTLE BROTHER <3

LOVE TO THE FULLEST AND ENJOY LIFE<3



MY FAMILY MEANS THE WHOLE WORLD TO ME AND I CHERISH EVERY SECOND OF IT.. WE ALL HAVE ARE UPS AND DOWNS IN LIFE BUT WE LOVE EACH OTHER ..

HERE IS A VIDEO THAT I TOOK AND IT MELTED MY HEART AWAY
BECAUSE YOU DON'T GET TO HEAR THAT LAUGH VERY
OFTEN AND WHEN YOU DO HEAR IT. IT MAKES YOU SMILE
AND IT MAKES MY DAY A WHOLE LOT BETTER
JUST BECAUSE WE LIVE WITH THIS DISEASE
IT DOESN'T MEAN THAT WE STILL CANT TRY TO MAKE
THE BEST OF OUR LIFE AND HIS LIFE GREAT
BECAUSE NO MATTER HOW HARD
THIS ROAD IT WE STILL HAVE GOD TO
THANK AND WE PRAISE HIM FOR
HAVING RILEY STILL AND GIVING US
THE CHANCE TO BE APART OF RILEY'S
LIFE... YES I HAVE MY UPS AND DOWN
WITH THIS AND THE LIFE WE
LIVE, BUT I WOULDN'T CHANGE IT
FOR THE WORLD..

Hospital again

So for everyone it has been a while since i have posted on Riley and here it is/...

             Riley was in the hospital again for his oxygen level and for over the past two  months Riley has been having really high heart rates so when went to the Dr. and one thing lead to another they put him in the hospital and then we almost discovered that he also had and still does high blood pressure but we stayed for two day and then we are home now they are keeping an close eye on him.. But they said that it is another sign of the disease.. My heart aches has we go through this and I am numb sometimes and at times i don't know how to feel anymore but i do know that i have to fight for him and the other babies out there with (NPD).. I don't always write on here because i am so busy with Riley and my five year old.. I know that Riley is here and is strong as ever and he will continue to fight the battle.. I do ask that you continue to pray for him...

Thursday, July 19, 2012

Georgia On My Mind (from Kaitlyn's Korner)

For parents with a terminally ill child, every second they have with their little one is one they will not get back. When Kaitlyn was alive, I had a hard time letting other people, especially non-family, spend any significant amount of time with her because those were minutes we would never get back with her. Of course, I did let people spend time with her but it was very difficult to not want to always be by her side.

Always by her side

















Riley, 22 months old, also has Niemann-Pick Type A. He and his family live in Georgia. I have been friends with his mom, Lori, for awhile now but never had a chance to meet her, Riley or their family when Kaitlyn was alive.

Riley











Over the weekend, Lori and her family gave me the honor of spending the weekend with them and getting to know Riley.

I even got to hold him! With NPA, it can be very uncomfortable for the child to be held, because his/her liver and spleen get so enlarged and uncomfortable. Even as a mom, holding your child is one of the greatest gifts. The fact that I got to hold Riley and not just for a minute but for 15-20 minutes! I simply can't describe how awesome and honored I felt.

LOVED  holding him!

















It is amazing to see how similar yet different each child with NPA is. When I met Riley I felt like he already knew who I was. I brought one of Kaitlyn's blankets with me. It's actually a prayer shawl that was given to us. Kaitlyn used to nap with it during the later stages of her life.

Jan 2012- Kaitlyn with her prayer shawl

















At one point Riley's legs felt a little cool so I asked if I could put Kaitlyn's blanket on him. As soon as I put it on him, his face lit up and was all smiles and almost giggles! I really felt that he knew it was Kaitlyn's blanket or that she was there with us looking over him. It is now one of my sweetest memories.

Riley's reaction when we put Kaitlyn's prayer shawl on him

The whole weekend was beyond wonderful. Just being able to talk with Lori and her husband, Chris, about their family and day-to-day life with NPA was so comforting. I would never wish NPA on anyone but knowing that there is someone else that can truly relate to what you have been through or are going through, is a blessing.

Lori, Riley and Chris


The only thing that surprised me was how conditioned I have been to the alarms on the pulse/ox monitor. In the middle of the night, I heard it go off and it was like no time had passed and I was instantly wide awake and on full alert mode! After Kaitlyn passed away, we let Riley's family borrow our pulse/ox monitor so it IS Kaitlyn's monitor. Same sounds, same everything! I was in a room on the other side of the house with the door closed and I could tell you each morning how many times the alarm went off and when the feeding bag stopped. It is automatic.

Jan 2012, I had to include this one!
Riley is such a sweet little guy. He is much smaller than Kaitlyn was but he has so many similar facial features that Kaitlyn had. They could be siblings for sure! As I held him and when I sat next to him and played with him, I felt like I was playing with Kaitlyn too. Looking into his eyes was like looking into Kaitlyn's eyes. They are different obviously, but they "spoke" in the same way.

Lori and Chris also had a daughter named Faith, who passed away from NPA. I was fortunate enough to go visit her with them. Faith died when she was 18 months old. She caught RSV (a severe respiratory virus) and wasn't able to fight it off. Now with Riley, Lori and Chris are experiencing NPA in a whole different way. They never dealt with the same seizures and lung issues that Riley is dealing with now. Faith was also larger in size, much like Kaitlyn was at 18 months old.

Faith Robbins- July 3rd, 2005 - Feb 12th, 2007


Lori and Chris were also blessed with a son, Chris, who is a carrier like Cole is and does not have NPA. He is five years old and so incredibly sweet. It was great getting to know him and to see how much he loves and protects his little brother.

Riley and big brother Chris!
 













Chris




















It is very interesting to see how different NPA can be in two children, Faith and Riley, even when they have identical genetic mutations. There is so much that can be learned from these children and families. We will PERSEVERE until we figure this thing out! 

Me, Riley and Lori

















I can't thank the Robbins family enough for letting me into their "world" and sharing both Faith and Riley with me, even if it was for only a few days. They, along with all of the NPD families, will always be a part of our family and hearts.

Please visit Faith and Riley's blog to learn more about them and show them the love that you have shown Kaitlyn and us. http://faithandriley@blogspot.com

Wednesday, July 11, 2012

Prayer's Prayer's

                                     
Riley is not feeling so hot, he has been really irritable this past week and he woke
up this morning and his liver was swollen and his feet are still pretty swollen and
he is also running a fever.


Riley has not had a fever in a long time and know he has on
again and not only that but Riley
is haing more trouble trying to use the
bathroom.. he cant really sleep
and when he does go to sleep its like
for maybe 5 to 20 Min's and then he is
up crying.


                                        I am so scared because of all the signs that he is starting to get
 and I don't really know how to acted at this point... I am giving him all the love that we can but
to see your  child go through something so heart breaking it just is unthinkable.. Riley is also still having his breathing trouble... Please everyone continue to pray for my family  nd I with sweet Riley. His liver is not working like it should and that is another sign of this disease... Riley is so strong and I believe in Faith but it sometimes is really hard...
Riley and Elle


                                                                Riley and Elle
                                                Riley does not go no where without his Elle he
                                                has had her since he was born and he will
                                                 let you know when you forget her..

                                                  
                                                          I  got a smile out of him
                                                         it took a little bit but i  did it and i
                                                           love to see that smile ...

Friday, July 6, 2012

Blessed


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..



                                                 I love these moments when you get to snuggle with
                                                 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
time


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
bad dream.


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..

                               Please conitune to prayer for Riley and Us as are road conitunes <3

Daddy Day

                                                                    * Are Eveything*
It was a Riley and Daddy Day, which they both love to do.. Riley loves to snuggle with you when you get him at the right time... This day was it and daddy took it and they both enjoyed each other as they talked and smiled at each other..



                                                      
                                                          *Love Like No Other*

We spend every second of everyday Cherish the time and moments with Riley and not only that but we also thank God everyday that we have with him and thank him for all the good that we have in are life. Riley means the world to us and Lil man (AKA) Chris Riley's big Brother and we count are blessing everyday.. Not a day goes by that we are not thankful... Even though we r battling this with Riley we cant blame God for it we have to believe and that is what we do.. We know that the road is only going to get harder and very sad but we have faith in God because *WITH GOD ALL THINGS ARE POSSIBLE..* Riley has that above his head on the wall and we look at that and it reminds us not to give up on him or God because we never know what is to come.


                                                          *Hero*
Riley is are Hero but not only is he that,  he makes use realize what a great and wonderful gift that God has given to us and we live each and everyday to the fullest... Even though Riley is battle this sad unthinkable disease we still can see how precious he is and how we are so thankful for him everyday.. Riley is a strong fighter and each day gets harder for him and us but we don't let it get the best of us that is for sure..

                                                                
                                                                 *Prayers*
Even though big Chris works all the time to provide for his family, he still worries and want to spend every second with Riley and it is so hard for him to wake up and go to work because he knows that we will not know when that time will come so Chris takes his weekends to make up for those day when he is at work and spends it with Riley and the family.. Riley loves to spend daddy day ...Riley knows when his daddy is around and it makes me so happy to know that when we are around it makes Riley's day better... Please everyone conitune to prayer for sweet baby riley and my family as
we conitune on this road..