Friday, February 24, 2012

Radom Happy pictures over the week..

I thought i would put up some good and happy pictures of Riley and so I did and they are great pictures that we got of him....

My little guys sleeping so good..

My to amazing boys who are such a blessing to us ...


One of daddy's Greatest gifts....


My little Angel sent from heaven to be with us and change our lives, and so many other peoples lives..


This is Riley's Nurse Diane ..


Smile that lights up the world... Riley is doing okay, we are still waiting on his results from his sleep study... But we have seen where he is struggling to breath now and as you know that it is very hard to watch your child have a hard time breathing and we can't do anything but wait on these result.. we have seen thing's start to go down with Riley more, but I do know that we are still fighting and will continue in fighting and praying for a miracle to happy because we believe that God put Riley here for a reason and that's all we can do ... please continue to pray for Riley and My Family as our journey continue...

Wednesday, February 22, 2012

Sleep Study

Im sorry I haven't put any new page up on the blog it has been really crazy the last couple of weeks... But here is some of Riley update.... Riley had to have a Sleep Study done, he had it done on Feb, 18th/2012 and it went okay for the first hour and then Riley started pulling the stuff off of him, but here is a couple of pics that night...
Riley is watching the lady really good...
almost done with all the wires..
So cute and is begin really good...
Chilling but very cute..... Riley did okay with the study we are waiting on the results still and they said that it will take about two weeks for the results I hope that they come soon because I would like to know what they said.... it was a crazy night with him because he did not like those wires at all, he keep pulling them off about ever 5 Min's and she would have to come and put them back on... but other then that it was okay.. I got a video of Riley when he was begin good with it so here it is ,.....

video

Please still continue to pray for Riley and My Family as we are still facing alot in this journey of battling with Niemann Pick Type A....

Friday, February 17, 2012

Photo Shoot


The Smile that lights up the world

Riley had a wonderful day with the photo shoot.... He smiled a lot but his brother was with us so that was one of the reason our Riley bug did a good job...

I had a great time with both my boys... Words can not express how
awesome it was because i don't get that many days where i can hold Riley and him not crying and
not wanting to be touch and to have my little guy beside me to... it made my day to have Riley that happy again..,

I love to see them both smile and happy together... It makes your day to see them together and having a amazing day ...... I thank God for this day that i got to send with both of my wonderful boys.....


The kiss that make your heart melt into a million pieces because it is so sweet how much love they share to each other and how much care they have for one another....

Riley Bug is an Angel sent from God to make a different in our lives and has a heart of gold.... Riley is one amazing little boy and he is still battling this Niemann Pick Type A Disease but it doesn't hold him back from shine through the light.... We pray every day for that miracle and one day it will be answered .... We are still going to keep fighting this and not giving up on him or these other babies that are fighting for there precious life....

Thursday, February 16, 2012

Loving life

Riley is doing good he is a strong little guy and that is for sure..... He is still battling this respiratory Infection but he is almost back to his normal self.... Thanks to every ones prayers:)

Riley bug is an amazing kid and he has such a big heart:)
He is trying to go to sleep and he has to have Elly and i think it is so cute because we had to get two of them, one for my car to keep in and one for his bed because with out it he cry and he knows and he will not go to sleep with out her......
Riley is taking his breathing treatment and he love to try to hold it by his self and he does really good when he has to do they breathing treatment half the time... He does breathing treatments 4 times a day.... I have learned so much from Riley bug and i am so amazed how well he is for him to have this kind of disease .....
Life with this disease is very hard but we just have to keep are head up high and be thankful for every moment of every day and night with them and be blessed because i know that he is my Riley bug that God give to me for a reason and so I love every second with him..... We live are life around Riley and his needs... We give him so much love and he does the same....

Tuesday, February 7, 2012

Day 7 February 7Th
Well Riley still has this virus and it hasn't been easy... It has taken a big toll on him as far as begin up and smiling, or hanging with his big brother Chris, and it hurts because I hate seen him like this.... His fever is still high and still has the rush, very uncomfortable, doesn't like to be held or touched anymore...

(Rash on him)
This is what his rash looks like) Yes i thought that is looked like a heat rush or a reaction but his pediatrician said it was a virus ... At this point they really don't know what it is because he still has a high fever and the rush... They said to just keep a eye on him and if anything else came up to give them a call... I am so tried of all the run around that they are doing.... I mean it is going on 8 days of this virus.. On top of that Riley also has to have a sleep study done next Saturday the 18Th because they said he is working really hard with his lungs...




Don't Know

Day 5 FEBRUARy 6th

Well i thought Riley was better but his fever came back 104.3 and so I give him Mortin and he was just screaming because he was and is in pain... He still has his rush and now he is covered with it, his belly is still hard as a rock around his liver..... He doesn't want you to hold or touch him on top of that...
Back at the Droctors)
Even when Riley bug dont feel good he looks up to his big brother for love and laughter.....

Back to the Doctors Office

Day three on February 4Th..

He was doing a bit better. With more Motrin, his fever went down some and he was really tired. By this point it was WAY past his and my bedtime. . There were a few spots on his belly that seemed rock hard so we wanted to have it checked out at the doctors offices. Everything was good so they said. His white blood count was still normal and his hemoglobin was normal which is good.Unfortunately this is the reality of this disease. Anytime he gets a virus, he will more than likely end up in the hospital. Our dilemma is do we hide our child under a rock so he doesn't get sick or expose him to others so he has a social life but have many hospital stays? Trying to find the balance isn't easy.


Riley's brother Chris alway much him feel better.... Riley is always happen when he see Chris .....


Riley was still running a high fever of 103.6 and he still had that rush and his breathing was very funny like he was having trouble so we went back to Droctor Ivey's office... They didnt really do nothing because they said that he should be over it by day 5 and to just keep an eye on him....

In the Doctor's Offices

On the morning of (FEBRUARY 2, 2012) as we were getting ready to start the day, I noticed that Riley looked pale and his fingernails were a little purple. I felt his forehead and he felt warm so we took his temperature. It was about 101 so we gave him some motrin. As the day went on, his fever got worse, it went up 104.6 and he started trying to vomit. I say "trying to vomit" because he has a nissen and technically can't vomit (a nissen is where they wrap the top of the stomach around the esophagus so that if the stomach contracts, like with vomiting or reflux, it won't go up into his airway for him to aspirate). So we immediately opened his G-Tube to let any stomach contents come out but he kept on heaving even when his stomach was empty...




(RIley is holding his brother hand while they are doin blood work)



With his disease, his ability to fight off viruses and infections is weakened. His platelet counts tend to drop pretty quickly so we took him to the ER at Oconee Hospital to have him checked out. He stopped heaving but still had a fever. They drew blood to check his counts, and did a chest x-ray in the ER. His platelet count was 81, normal for him is in the 100s. His white blood cell count was normal. The chest x-ray was streaky, common with a virus, but nothing too concerning. They also did a flu A&B swab plus the RSV twice and they all came back normal...

Parainfluenza 3

We just found out that Riley has parainfluenza 3 (PIV-3), a common cold virus. Here is a link to the World Health Organization on parainfluenza 3: About Parainfluenza 3