Friday, March 22, 2013

together all things are possible

 So I thought it would be nice to let everyone know a little bit about my husband and I, plus are wonderful story of how we met... I am married to Christopher Robbins ha ha Winne the pooh he he I always love  when people ask Chris how is friend Is  but anyways we lived right down the road from each other but at first we didn't even know that.. We met at high school it was my freshman year and I finally got to go to a real school not that home schooling is bad BC it isn't I got to do a lot of things that most kids could only dream of doing... but my parents let me go to high school and there it all started.. we have passed each other in the hall going to are next classes and I was the new girl so I didn't really know where my next class was and it was his last yr there, but when I passed him in the hall I got this weird feeling and I couldn't stop thinking about him that whole day and wondering what is name is, so that after noon I got on the bus and turns out that he rode the same bus and the bus was packed I mean packed there was no seats left except with Chris and that is really where it starts. I ask to sit with him and then we started talking and I just new he was the one and the same for him..

Then we will skip a lot of it and get to where we are now , well we have been married for 8yrs and together for 9yrs we have had 4 children two gone to heaven and two still here.. we would have had three boys one girl , so are life has been a roller coaster and we have had are ups and downs but we are helping each other through everything and taking it one day at a time... We have learned that time will only heal and it takes time to heal.. it isn't easy having a hard relationship with a sick child it is very hard BC it changes a lot of thing BC you don't really understand why it happen to you and your family.. Chris and I have one health little 5 yr boy and then we have Riley and we love every second of everyday with both of our boys.. we talk to are oldest son... but he is still young and don't really understand a lot .. But I know that marriages its self is hard work and then putting this on top of it is even harder but I believe that if you truly love him or her then you will make it through anything but I know that ant always the case and some people are different but that is just what I believe..

Even tho sometimes I feel like just giving up I cant BC I love my family too much and Chris and I have and still is going through so much and it is so hard sometimes with everything going on but I know how much he love me and I love him and together I know we can get through anything but we also have God to thank BC with out him and our family I don't really know where we would be at today>>


Some for people out there that is going through the same or something like we are with a child lean on your husband or wife for help through thing talk to one another cry with each other believe together that all things are possible.. I love you Christopher Robbins and thank you  for begin a amazing husband and father to our kids....



I thought I would share this with you hope u like it.. that is only a little bit of our story....

Saturday, March 2, 2013

bucket List

Hi everyone I was read little miss Quinn page and how they are doing a Bucket list for her and  i thought it would be such a great idea to do for Riley and little chris... I need everyones help to make this possbile for Riley we need to rasie the money to be able to do the things we would like to do with him.. Riley has came a long ways  and has been through so much that i think he needs this not just for him but also for his big brother who is also going through so much as a 5yr old.. I need all my Friends and family help to make this happen for him... we need to rasie money to make this happen :)

  1. Take Riley to the zoo
  2. Take Riley to the beach
  3. Take Riley the aquarium
  4. Take Riley to Disney
these are some of Riley's dreams that we know he and little chris would love to share and make memories with eachother... Riley cant travel far so we only put these up here bc there arent that long of a drive...

We would like to make this happen for Riley with the little time we have with our precious little boy.. lets make these dreams happen...

Tuesday, January 22, 2013

Rough time

Hi everyone I am back,there has been so much that is happening that its hard to keep up with the blog all the time.. I am sorry that I haven't been on here and updating you guys on how Riley is and how we are doing day to day as a family so I am going to let you know a time bit because I have a little bit of time..

As everyone know that Riley is suffering from a RARE and Fatal Disease called NIEMANN PICK TYPE A, and it is taking a big towel of his Little body, in that note he is having a lot of trouble with his muscles, when you pick Riley up it feels like you are going to break everyone in his body and believe me i am so scared we are very careful  with him. When I look at my sweet little boy all i can do it cry because all the pain his is in and what all he has to go through everyday it SUCKS and i hate it so bad..

 Riley is now having a lot more coughing fits... For him it takes alot out of his little body to make what other people would say is a normal cough sound.. We are now having to suction him out alot and how we do that is with a (thin tube up the nose that goes in WAY back ) and it helps him out.. We do this every day all day now and it just breaks my heart to have to do this to him..

I as a parent believes that Riley is doing the best he can in the state that he is in right now with the disease. We are having to do more breathing treatment with him .. His doctors up his dose on the methadone to 1 1/2 every 4hrs now and it seems to help him for a Little while and i know that i am doing everything i can to be the best for him and do what is best for him...

 With Riley's disease progressed we basically don't go anywhere much anymore other then the doctors and sometimes the store because Riley cant tolerate the rides or his stroller anymore and it hurts  so bad to feel that you and your child is a prisoner in there own home..

Riley cry's all the time know and he doesn't smile or try to talk anymore and it is killing me so bad. He is sleep alot more which i know its not good.. Riley's Apneic episodes are getting worse, he is having a lot more seizures to and he is on keppra 2ml twice a day..Riley has to have another EEG done on the 28th of the month and that would be the 6th EEG done on him....

I pray everyday for peace and comfort for him and for my family.. Riley is a true miracle to me and to so many other ppl... I will tell you that it is so hard trying to be a mom, wife, i have the hardest time trying to take care of my 5yr old and Riley plus be a wife on top of all that is going on.. I mean i have so much trouble trying to cook or the littlest things...



Here is a video of my sweet angel Faith  who I miss dearly.. My Baby girl lost her battle to NIEMANN PICK TYPE A in FEB 12 OF 07...

Friday, January 4, 2013

new year wow

Hello everyone I know it has been a while since i have wrote on here and i am sorry for that, it has been really hard with the holidays and all because i have been missing my little girl alot and having Riley go through all this is very hard... He has accomplished alot and that is for sure..We had a amazing Christmas with Riley and the family. Little Chris loved all this gifts too:)..
    
I am in lose of word for the new year because i don't know whats to come of it... Today has been sad for my family because my  husbands grandma passed away today and it is very hard but she will be missed by so many<3

For the past couple of months Riley has had alot more down falls and is having alot more trouble breathing and for the last week now he got a cold and it is putting more trouble on him with breathing, his stats have been dropping more down into the 70's but his heart rate is normal
his motor skills is sad because he has went way down he can't move his head or left it up, he doesn't like to be held much anymore and he cry's all the time, he doesn't smile much anymore, his hands are  curl in and he cant make them straight anymore, his liver is very big also his spleen too.. his seizures haven got worse, his Apnea has gotten worse too.. To see a child but not just a child but your own child go through this and just watch him go down hill more it hurts so bad.. i can't stand to see him like this and to know the out come of all of this it really sucks..

You  Know on top of this all I have my five yr old asking me about his brother and if he is going to be angel like his sissy, i mean really what do you tell a five year old? sometimes it is crazy because he will come up to me and say mommy Riley is Gods child to and he will be okay with sissy, and all i can do is just cry and cry because i don't understand everything and all.. But for a five year old to know and understand a little about what is happen is pretty smart.. we tell him what is happen with Riley and that he will be angel when God is ready for him and he just sits there and says i am sad but i will be here for you mommy...

I am in this place and i just don't know its like i have tried to stay strong for so long but i am tell you it is caughting up with me...

I can say that Riley is a very strong little guys and he is what keeps me going and believing in miracles... to wake up to see him and my other two boys is amazing i know that our road is going to get harder but with God by our side we will get through it ...

Wednesday, November 7, 2012

Lost

Riley went to the doctors today and well they put him on METHADONE because he is in a lot of pain now and they said that we need to talk to my 5yrs old and let me know that his little boy will not be here much longer... Riley Brain is more damaged they said... I am lost in words and lost in how i feel. I really don't know how to act really i am so worried about Riley and all. Riley has gone down hill alot more and it so worries me because i know he will not be here forever but i still pray for a miracle and i will not give up on that but at the same time i am scared...I need prayer prayers because this is so hard right now and i just dont know anymore.. how strong can you be when you just dont know anymore...,but i will update more later....

Sunday, October 21, 2012

everyone

hi everyone that is interested in  my hair bows you can go to facebook and put in riley robbins and that is riley's page so them you can inbox me and let me know which ones and they say the prices on them to... thanks

update

Hi everyone Riley is doing good... I mean he is having some more down fells but he is still here with us and we are very thankful for these days... Riley is an amazing little guy and i am so lost in words to say to everyone bc it is very hard right now to even talk about thing or to stop and think about thing bc i try to stay busy so i dont have to think about thing.... My boys are my whole life and I would do anything in the  world for them and it hurts that Riley is in all the pain that he is in and it is not fair at all... I have having a hard time bc the hoildays are coming up and i dont know how to really act about them... i am trying to hold it together for my 5 yr old but it is getting very hard...


Here are some pictures i took today with my boys<3


 
 
 
 
 
 
Also please keep in mind i am selling all kinds of hand made hair bows and wallets for Riley's fund so if you are inferested in that please inbox me and i will tell you more and show pics to you...

Wednesday, October 10, 2012

Hello everyone it has been a while since i have posted anything.. I have been lost in words really to say to everyone.. Yes Riley is still here and he is doing ... We have seen a lot more down fall with him but we a still very grateful to still have him here with us... it is getting even harder to see him like this and not only that it brings back some sad memory's of my little girl..so i have been lost in words... I know that i thank God every day with Riley... so I am trying to put a fundraiser together for Riley and i would love yall's help in it please... I make hand made hair bows all different kinds and the money from the bows will go into Riley's fund:) so if y'all know any little girl that love to wear them please help and buy them .... here is some pic of the bows i make  remember this is for Riley<3














Please everyone help me sale these for Riley and to help raiser money for him as he will need... I make all different ones if you are interested in them please leave a comment on the ones you want... thank you Lori <3






Thursday, September 13, 2012

 
 



                                                   
 
 
 
 
 
 
 
 
 
 
We did  a photo shoot with a friend with Riley's birthday and we did some family photo's too
it turned out great here are a few of the pictures she took and they even turned out good... <3

Tuesday, September 11, 2012

Despite a disease filled with constant difficulties and challenges that would cause most to simply give up hope, Riley continues to move and inspire me and everyone that is around him as he continues to fight this devastating disease that currently has no treatment or cure... His fighting spirt has become a contagious disease itself, and has inspired and motivated closet to him to never give up hope and join him in this fight against Niemann pick Disease.. There is a Quote that always passes my mind and that is "You never know how strong you are until begin strong is the only choice you have.. It is so true, I am strong because of Riley and little Chris, because my family need me to be. This might sound crazy but this disease has opened my eyes to how our precious son was and is changing people's hearts and lives.. I know you have probably heard me say this before but even if it's just for a moment while you are reading the blog that Riley's story is or had touched your heart or making you feel differently about your life and the way that you lead it or whether it's for a day, or a week or forever Riley is making and has made a big difference more then i could ever imagined.. This is why he is here, to touch your heart, to make a difference to make you realize what is  most  important to you and in your life.. to see the goodness in others and in your self and to have Faith that there is a Reason even if we don't understand why or cant see it at the time... just never stop believing and always have Faith... I thought i would share this with everyone on how i look at life <3

                                           Believe if not for you but for Riley...
His precious face lights up the world <3
In just four day's will be very special to us because Riley will be making it to his Second Birthday and it is a very biggggg step for him and for us as a family... My heart skips a beat because i am so blessed to be able to celebrate it with him... Riley loves monkeys and elephants as everyone know, so we are doing all monkeys this year as his theme... As the days get closer and closer i get more excited about it... it is a dream come true...




                                             An old pic but i love those memories


As we celebrate Riley's birthday it will be a very happy day but also a very sad day bc we didn't get a chance to celebrate are little girl second birthday so we will have a moment for her...


                                                            My Angel R.I.P. Baby girl...



                                                          Baby girl your little brother reminds me so much of
you and looks like you in so many different ways... Wish you were here with us.. Your always in my
heart and mind not a day goes by that i don't think  of you.. mommy loves you angel...<3
                         


 
 
 

Friday, September 7, 2012

INSPIRATIONAL LETTERS

HELLO EVERYONE SO I WANTED TO KNOW IF YOU WOULD LIKE TO DO INSPIRATIONAL LETTER TO RILEY AND WHAT I MEAN BY THAT IS YOU CAN SEND US A LETTER AND I WILL READ IT TO RILEY AND SHOW HIM HOW MANY PPL ARE TOUCHED BY HIM AND HOW MUCH OF A IMPACT HE HAS MADE.. READING LETTERS FROM ALL OVER THE WORLD TO RILEY AND LETTING HIM KNOW HOW MUCH LOVE IS OUT THERE FOR HIM WILL BE A BLESSING TO HIM.. I CANT WAIT.. WE WILL ALSO BE SENDING OUT A INSPIRATIONAL LETTER BACK TO YOU AND A PICTURE OF RILEY BUG IN HONOR OF HIM...



MY ADDRESS IS - 120 SUNRISE DR. EATONTON GA 31024...

 I THINK THAT RILEY NEEDS THIS TOO AND IT ALSO HELPS ME AS A MOMMY TO KNOW THAT I HELP MAKE A DIFFERENCE'S IN SOMEONE LIFE TO..

Thursday, September 6, 2012

Mama and Riley Bug

Mama & Sweet Riley Bug
 
Our day together is not like a ordinary day
to us it is a very special day
because with sweet Riley
we don't get to hold him
that much,,
but to day was different
we sat together and
laughed and  talked
to one another..
 
I enjoy every second with him
and cherish it too..
Riley is like no other
kind..He is a
very special baby
and its no
all because
he is sick..
 
 So many people that have health children don't
even realize that sometimes
that they should not
take them for granted..
and with Riley we learned
that we should be very thankful
for what we all have in
life.. Riley also reminds
us that even when we
think we have the worse
to still laugh and play
and to enjoy life to
the fullest..
 
Someone so dear to Riley and my Family had
wrote in this precious book warrior baby
that stuck out to me, was
LESSON BABY THAT YOU
TEACH WE WILL ALL
STRIVE TO REACH..
BY Shannon Laffoon who
is also a NPA parent and
her little angel lost his
fight against NPA...
You can go to www.wylderjames.com
to read about him and his life
and also get his precious book..
 
Riley is so precious and dear
that i would do anything in
this world to take that disease
from him and cure him
but i know that all
 i can do it pray.. so
that is what we will
do is pray..
Riley is still
having more issues but it
is due to his
disease..
jsut know that Riley
will be two years old
on the 15th of this
month and to us it is
a big step for him
and for us
bc due to his lungs
the dr.s said that
he was luck to
make it to 20 months
and here he is about to
be two..
Please contuie to pray
for are family and
Riley....

                                                                                                  

 


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..

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 ..
video

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