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...

6 comments:

  1. Such precious pictures of Riley. Know that you are doing everything you can for him - and he is a big fighter.

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  2. Oh Lori - I am so sorry that Riley is having such a hard time. It breaks my heart to think of how hard this is for all of you. Please know that there is a world of love and support coming your way. Sending many wishes for relief for Riley and peace and comfort for all of you.

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  3. Oh Dear Lori, I feel so much pain for you and the heavy load you've had to carry for one so young. I cant imagine the pain of losing your Sweet Baby Faith, and now having to go through this terrible disease with Riley again. They both are such adorable children. You are doing an unbelievable job being a Mom to all your kids....dont be too hard on yourself, take your life one day at a time, enjoy the time to love on Riley & your 5 yr. old, and let your husband look after YOU! There are so many of us out here thinking and praying for you, hang tough, God bless you all. (((((HUGS))))))

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  4. dear Lori a Chris and Riley

    I am sorry that you are all going through,, such very hard times so not fare, this disease is so hard on our little babies,,, I have been praying for Riley and all of you for the longest time and I pray that he does not have to have pain and suffering God Bless your family

    we lost our dear Grandson Jacob on Nov 15th too Np type A & B he was only 5 days younger than Riley, we miss him dearly and when I visit him I always ask him and our other children who fought this fight with N//P to hold wee Rileys hand and give him peace. sending love and support from Calif,, God Bless you all

    Dennis note} I will never give up this fight for N/P to help in any way I can too help our children!

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  5. I found your post from Kaitlyn's Korner. Think of your family often, I know alot of us are praying for you. God Bless You,

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  6. You, Riley and family have my prayers. These children touch my heart so...
    Becky, in TX

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