hes home

Well I I am going to make this short Raydon came home with us yesterday because we had a meeting on Thursday after my husband got home and the news was not so good we have decided to bring him home and let him spend his last few days with our whole family so that everyone can meet him. They do not know if it will be days or weeks but I am going to make every second with him the best moments of my life. Thank you everyone for reading we love you all and we hope your havin Happy Easter I know mine will be the best 1 ever.

crib

Well Rayden finally got out of the heated hospital bed today he is now an a baby crib because he is maintaining his temperature on his own tomorrow we have a big meeting with the doctors his nurses and the neurologist and all the other people that have invested time in his care. I am excited because I want to know exactly what they think the outcome for his future is going to be and to get multiple peoples opinions on his future I will keep everyone updated thank you all love you and keep up the prayers they are much appreciated.

raydens update

well I have not written in a few days because my mom brought my girls up to Salt Lake for the weekend and I just spent time with them and of course rayden to.  we had a nice weekend I love seeing my girls. But anyways Rayden is doing very good without his breathing machine he is still on a thing that goes in his nose and it helps with oxygen and it also helps to keep his lungs open but they are slowly going to wean him off of that just to be safe, then he will just go to oxygen but when he gets off of this one then he can start to try eating from a bottle I really hope he learns fast and does really good cause he is already taking a binky and he loves it. He also loves to be wrapped up in a blankie it helps him feel comfort. They did a head ultrasound today to see what is going on with the fluid and they said that they still need to continue to tap and take fluid off once a day because his ventricles are still very enlarged. I am hoping that they will figure something out with the shunt soon so that we can just get it over with if he is going to need it But is going to suck because when he goes down for any surgery they have to re intabate him with his breathing machine cuz he will be put to sleep and it is just safer that way, I don't want them to Wait any longer than they need to tho cause I don't want anything to get worse. I love that I have been able to sit up at the hospital with rayden almost all day everyday and have quality time because on Monday I have to go back to saint George for the week and only be here weekends cause I miss my girls and they know I am gone and they need me, also my husband will have to go back to work. my mom and dad are taking care of my girls back in Saint George I am so lucky to have such great parents I love them so much I do not know what I would do without their support. I am just hoping that rayden gets to come home sooner than later but they still have not told me any potential dates, but I hope its soon because it is really hard to try to be in 2 places at once. Thanks to everyone who came out to Raydens yard sale I heard it was a big success thank you everybody for your kind words and support keep up the prayers love you all. O ya my husband comes home in 2 days I am so excited this has been a long 5 weeks:)

breathing machine

well it's been a few days since I have written but not too much is going on we are still taking it day by day and hoping for the best. about the DNR I talked to my husband and we are most likely going to sign 1 when he comes home next Wednesday but we are going to specify it so that it will only be if his heart were to stop then they would let him go and not be really aggressive because in my mind he has not had many problems with his heart so if it were to stop I feel like that is his way of telling me that he is ready to go to heaven. But on a good note they are going to try and take him off his breathing machine today at 3 o'clock I am extremely nervous but at the same time super excited I just really hope that he is able to tolerate it. I am so excited that I might be able to hear his little voice for the first time today even though it will most likely be a cry I am still really excited. People ask me how I am NOT a complete mess everyday but I just say for those of you wondering this question if tomorrow were to be my last day with him I do not want to remember it being super stressed out and crying all the time I want to remember being happy with him and just loving him as much as I can. thank you For all caring and staying updated with little rayden  I will keep you updated on the breathing later today. oh yeah and I forgot physical therapy started coming by and working with rayden todaay they can'T do much but I feel it will still be helpful in the long run the earlier we start with physical therapy:) Rayden has fought so hard to be with us and I am NOT going to give up on him we will learn new things and we will work through whatever comes along our path and hope for the best.

some video of my cute little man!

Rayden trying to open his eyes and wake up he is till on a lot of pain medications, but i think he is just so cute

ignore my voice eww!!!

My baby boy I love him so much

it is sad to see his little cry face but so cute at the same time i had to record it

you cant hear him cry cause he is on the breathing machine and the tube goes right in between his vocal cord but he defiantly has emotion and can cry

he is just to cute!!

hydrocephalus!:(

as you already know Rayden has hydrocephalus (fluid  build up in his brain). the doctor came into talk to me last night while i was with Rayden and showed me the CT and MRI scans of his brain, his brain is filled with liquid and the doctor says they are doing what they can but they are scared they will not be able to get that brain tissue back cause it is so damaged cause of the fluid and he is pretty sure Rayden is going to have a bad outcome in life like he wont talk, walk, feed himself non of those things, it breaks my heart to think of him having to live a life like that. the doctors want me and Chris to sign a DNR (do not resesitate) they say his quality of life is going to be poor and i am really just stuck i do not know what to do or think right now it's so hard being alone not having Chris to talk to in a time like this i want to know how he feels about it cause i honestly have no idea what he is going to think on this! i do not want to loose my son i love hi with all my heart it is unbearable to think about loosing him not having him in my life but if he is not going to be able to move or do anything i cant imagine putting him threw that either, i am stuck i wish they could tell me 100% what his outcome is going to be, and its also hard cause i have researched and read so many stories similar and the kids are fine now when the doc told the the same thing. I am stuck i wish i had super powers right now so i could see the future for him!

YARD/BAKE SALE MARCH 23

YARD/BAKE SALE COME OUT AND SUPPORT IF YOU CAN IT IS VERY MUCH APPRECIATED!!!! IF YOU HAVE ANYTHING TO DONATE OR WANT O BAKE SOMETHING CONTACT Tia Stokes @ 435-216-8974!