June 29th

Well i haven't updated in a little while so here we go.
Chandler is doing alright he has started spitting up every feeding again so we have to move his feeding down again probably for another couple months. It seems like he does good at six an half for a week maybe two an than his body cant handle it. He is still on all medication. He is still having seizures. He seems to be coming more an more restless. He isnt sleeping very good either. On a good note he is getting more alert an he is getting stronger. He is Sitting in a bumbo an lifting his head an he is bending at his ribs anymore. Therapy is suppose to be starting soon so hopefully that will help. Hospice is still coming , hopefully he hits the one year mark an we can talk about discharge. Its still all hard but day by day. He is a mommas boy. He also had his first library trip today,We checked out the rainbow fish, very hungry caterpillar, an penguin.Chandler liked the rainbow fish book his head just keept going back an forth, an him an kaeden went to lego party. Him an kaeden also visited with great grandparents on jimmys side. He also had his first wagon ride an fell asleep. As for kaeden i haven't heard anything about his results yet. An we are still staying in a motel it sucks i am paying so much to stay it ots ridiculous. There are no good apartments. I am handle everything best i can. Kaeden is acting up being here cause i can't takr him outside alot an its so hard trying to juggle everything.But day by day it will get better. They say god doesn't give ya more than ya can handle a he gave me chandler an all these obstacle cause he knew i could do it.

June 15th 2012

Update, Chandler doesn't sleep really. None of his meds have changed. He seems like he is getting better but trying to not get hopes too high. His bumbo seat should be here soon. Thanks to karen. He is still trying to sit up. He got to chase his first seagull today. I am sure i looked like a moreon chasing seagulls carrying a baby but every time one flew away his eyes got so big an he started stretching out.  He laid an talked with kaeden today. He watches everything kaeden does when he is around.  Its amazing that Chandler cant show really when he is happy or anything but him an kaeden have a good bond. Kaeden loves to talk to him an hold him an kiss him. An Chandler never gets fussy or anything just watches. I love it.  Update on kaeden, he is going to u of m on Wednesday, we found out he isn't producing enough bone marrow an has a protein defienciey. His pedtrician says he has all signs of lukemia but she doesn't know for sure so we are going to specialist to find out for sure. I am having a hard time dealing now an more just keeps adding on but i am sure i will deal just fine with what ever comes my way with either kid because i live for my boys. Sometimes i feel so bad cause i have done everything right an one kid is sick for sure an now my other one might be too. But i am gonna stay positive untill i know for sure an i will do my best even than. Well thats it for now.

June 10th 2012

Well here is an update on everything.  Chandler is on his humidifiers pretty much all day. He is on oxygen few hours everyday. The past couple days he has sleept four hours at the most. This kid is crazy. He went to the art festival yesterday an had fun being outside. We took him for a walk friday night he loves being outside.  He is still on all his meds with an antibiotics for a respiratory infection. He has been losing color the past couple days. I feel so bad he cant b outside more but he over heats so fast an he ends up having mire seizures. But i will take him out am do as much as he can handle i want him to experience as much as possible. Right now we are waiting on a house to open an we are staying at a motel.  Chandler is doing good. He is liking the air condition i think.  Well thats all for now.

June 1st 2012

Well Chandler got to go home today thank god. He has another new machine.  He has to be on oxygen an humidifiers all the time now. An they upped his meds to help seizures. They also found out he has a germ in his lungs that hasn't been seen before. So has soon as they know i will know. Doctor said he is special he might as well have special germs lol. He just has to be watched for fever an cough an stuff. Signs of infection.  So as of Right now we wait. Hopefully don't have go back.  On a good note. He his turning his head on his own, trying to sit up. He like his puppy that talks to him, he likes bedtime stories.  He is also 15lbs 9oz now. He is gaining good weight.  My little chuckie monkey.