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 ...