Brody had a relaxing day of watching TV, sleeping for about 3 hours and weeing alot, due to flushing his kidneys. He has gone through 1 and half 20 pkt of nappies in the 3 days.
He has lost all social skills with strangers now, as he ignores them totally, he tells me to tell them to get out and go away. Brody even told me to stop talking to strangers! Had to laugh as he used to always say hello to anybody on the streets. He also told me that he didnt want this male nurse as he was a crazy man. Thank god the male nurse took it as a joke. But he really did look crazy.
We are still in here tonite as the chemo has to be flushed out complete before they will send us home. Brody is doing so much better than yesterday and seems a bit more active. He is totally getting sick of this and having more and more problems to even get his meds or wash his mouth out. Brody needs to wash his mouth out with special stuff as the chemo can cause mouth sores. He wont let me do it any more and i have been so worried with him getting mouth sores, that now have one myself. I have to stop stressing!!!
So hopefully home tommorrow, have to wait and see.
Friday, February 19, 2010
Thursday, February 18, 2010
Frustrated Day!
Brody's morning was pretty normal, laying about in the bed, watching TV. He is still not eating much or drinking alot. I did lots of activities with him today, school readiness stuff and playdough. We had a good time just the two of us, with no one popping in.
Brody's blood levels were low and he needed to have a blood tranfusion. The amount of different people's blood that has gone inside him, makes him not blood related to me now! HA, ha,ha. I want to take this chance to say thank you for donating your blood to the blood banks, as Brody would not make it through if he didn't have it. So big thanks to everyone! But remember to donate when you can, as there are more people that need blood, plasma and platelets.
The afternoon was frusstrating as the nurse had to change his dressing, I had to hold him down again. One day i will get someone to film this experience, so you can see what he is going through. Then we had Mary-Anne from Aspect visit us and Megan from the hospital OT. Brody wanted them to both leave, but mummy had to talk to them about the best ways to help him. By this time he was worn out and very tired. He feel asleep.
Then Joel his father turn up, but Brody would not wake, i took this time to go out of the room for a little break, didnt do anything but sat outside and talked to a Father with a 13 year old son with cancer too. We had a good chat! I come back in and Brody was awake watching movies with his dad. Then the nurses told us we had to move rooms, so i had to move all our stuff to another room. Joel and i then took Brody for a little walk to get some exercise, we stopped off at the starlight room to play games. Didnt stay long as Brody was still very drained, but hypo at the same time because his father was here.
Brody spent the next lot of hours watching movies again and getting ready to sleep. He is telling me that he dosent want this any more, no more sharpies, no more cords and no more cleaning out his mouth. How do you explain to a child with Autism that he has to keep having these things? Its very hard and frustrating.
Brody's blood levels were low and he needed to have a blood tranfusion. The amount of different people's blood that has gone inside him, makes him not blood related to me now! HA, ha,ha. I want to take this chance to say thank you for donating your blood to the blood banks, as Brody would not make it through if he didn't have it. So big thanks to everyone! But remember to donate when you can, as there are more people that need blood, plasma and platelets.
The afternoon was frusstrating as the nurse had to change his dressing, I had to hold him down again. One day i will get someone to film this experience, so you can see what he is going through. Then we had Mary-Anne from Aspect visit us and Megan from the hospital OT. Brody wanted them to both leave, but mummy had to talk to them about the best ways to help him. By this time he was worn out and very tired. He feel asleep.
Then Joel his father turn up, but Brody would not wake, i took this time to go out of the room for a little break, didnt do anything but sat outside and talked to a Father with a 13 year old son with cancer too. We had a good chat! I come back in and Brody was awake watching movies with his dad. Then the nurses told us we had to move rooms, so i had to move all our stuff to another room. Joel and i then took Brody for a little walk to get some exercise, we stopped off at the starlight room to play games. Didnt stay long as Brody was still very drained, but hypo at the same time because his father was here.
Brody spent the next lot of hours watching movies again and getting ready to sleep. He is telling me that he dosent want this any more, no more sharpies, no more cords and no more cleaning out his mouth. How do you explain to a child with Autism that he has to keep having these things? Its very hard and frustrating.
Wednesday, February 17, 2010
Rough Day!
Brody was yelling out all morning, "I am hungry". But i could not let him eat. He also was very stress as he would not do any thing the nurses wanted him to do. I told them now they know why he cant share a room, as he was yelling, hitting, kicking and trying to bite us. He was on his full show today. It worked out good as a special person come in and could see what he was like. This wonderful person was Jill from ABI, she is a behaviour therpist and she worked wonders to get Brody on her side. She is going to be coming every week to help Brody, me and the nurses and Doc's. He had lots of laughs and giggles, it was good to see a stranger making him laugh. A big special Thank you to a wonderful women that has help us out in so many ways, Chantelle!!!! Thank you for introducing us to this wonderful lady, she helped his morning be so much better.
Brody then had to go into the clinic where he had his bone marrow test and Lumber puncher, this is where they put two small holes in his back, one to get bone Marrow out for testing and the other to put chemo in his spine, to stop the cancer cells from travelling up the spine into his head.
Within an hour or so Brody woke up and went back to the ward.
Early this morning they also started him on a chemo drip, which is still running at 10.30pm tonight. He has spent the hole afternoon throwing up but is still eating chips, icy pole and jelly.
One time, when he was throwing up really bad, i was in tears and telling him i was sorry that he had to go through this, my little man, while still chucking up touches my check and rubs it so softly. Made me cry even more. He is always worried about mummy and tells me he will never leave me and that he loves me and i am the best cook in the world.
The rest of the day he has been sleeping and resting while watching TV. Grandma and Grandpa popped in for a little quick visit to give me a break, but other wise it has been just a normal day at the jail house. This is now the start of the second block of chemo which approx will go for about 2 months give and take, i am expecting to see him be alot more sicker, as docotor told me that most kids are set back for ages before they start this block and Brody was brought forward. After the second block, he will then have a third, then they start preparing him for transplant. So approx looking at around 4 to 6 months before transplant.
Brody then had to go into the clinic where he had his bone marrow test and Lumber puncher, this is where they put two small holes in his back, one to get bone Marrow out for testing and the other to put chemo in his spine, to stop the cancer cells from travelling up the spine into his head.
Within an hour or so Brody woke up and went back to the ward.
Early this morning they also started him on a chemo drip, which is still running at 10.30pm tonight. He has spent the hole afternoon throwing up but is still eating chips, icy pole and jelly.
One time, when he was throwing up really bad, i was in tears and telling him i was sorry that he had to go through this, my little man, while still chucking up touches my check and rubs it so softly. Made me cry even more. He is always worried about mummy and tells me he will never leave me and that he loves me and i am the best cook in the world.
The rest of the day he has been sleeping and resting while watching TV. Grandma and Grandpa popped in for a little quick visit to give me a break, but other wise it has been just a normal day at the jail house. This is now the start of the second block of chemo which approx will go for about 2 months give and take, i am expecting to see him be alot more sicker, as docotor told me that most kids are set back for ages before they start this block and Brody was brought forward. After the second block, he will then have a third, then they start preparing him for transplant. So approx looking at around 4 to 6 months before transplant.
Tuesday, February 16, 2010
Emotional Day!
Back at the hospital at 8.30. Brody didnt want to go, cried nearly all the way, and i had to pull him from the car. I too was not in the mood to go either. We went to clinic and waited. The nurse called him to take his bloods, every thing went as normal.
We then had to go to nuclear medicine where we waited again, for Brody to have a kidney test. I tried to explain to Brody what was going to happen but they did it different to what John Hunter did. They called us in and Brody had to have a sharpie in his hand. Again i had to sit on top of him and hold him down while two nurses did the sharpie and add the liquid into his veins. It was really hard for me today and i had a little cry. Then we had to waited around for 2 hours before they did the next part.
We went out to the hospital playground, as it was a cooler day and only 1 other child there. We went back and they took blood out of his cords. They told us to come back in an hours time. So we went back to the clinic and they told us to wait to see the doctor. Time was ticking and we had to go back to nuclear med, so we told the lady and went back, waited and then they did bloods again, and told us to come back in an hour. My face just dropped, i said i have to come back again. They said yes. Brody at this stage was getting really restless and starting to muck up. We went back to clinic and they again told us to wait. Brody played with the playstations, ate popcorn and rice crackers and watched TV. He was starting to get tired. He ran off twice, trying to go home to grandma's. At this stage my level of patience was wearing very very thin. Again time ticked on and No doc. We again went back to do the last bloods. Come back to clinic and waited again.
Finally the doc called us, spent 5 mins with us and told us to go and wait to be admitted into hospital. The lady at the desk said we could go home and come back at 7.30pm. So i jumped at the chance and left. We got home after 4.00pm and Brody and i crushed out for 2 hours. Grandma had cook us dinner and then left to go back to hospital.
Arrived at hospital, still very tired and patience still very thin. We saw the nurses at the desk and they told us the room number. We got there and we had a shared room. Which is ok. but not for Brody. As remember he dosent like strangers and the ward and nurses were all new to him as well. I also pay private health to cover for him to have a private room. That was the last straw, i broke down in tears and said this wont do, as i have had a bad day and dont need Brody to get more restless, Brody and i both need our rest. The nurse then tried to help us get our own room. I dont mind sharing but as some of you would know its harder to deal with strangers and keep them settled when other people are around.
Still i have nurses saying to me all kids do that! NO! ALL KIDS DONT DO THAT!! I have had another child and worked in child care for 17 years, plus have a masters in early childhood teaching. ALL KIDS DO NOT DO THAT! they might do it once or twice but not all the time and not to the same degree. You can compermise with other children, Autism kids cant. I then gave them Chantelle's - Brody's story to read. Thanks again Chantelle! Please check out Special stories for special children in the link on the side page. Thanks.
We then had to go to nuclear medicine where we waited again, for Brody to have a kidney test. I tried to explain to Brody what was going to happen but they did it different to what John Hunter did. They called us in and Brody had to have a sharpie in his hand. Again i had to sit on top of him and hold him down while two nurses did the sharpie and add the liquid into his veins. It was really hard for me today and i had a little cry. Then we had to waited around for 2 hours before they did the next part.
We went out to the hospital playground, as it was a cooler day and only 1 other child there. We went back and they took blood out of his cords. They told us to come back in an hours time. So we went back to the clinic and they told us to wait to see the doctor. Time was ticking and we had to go back to nuclear med, so we told the lady and went back, waited and then they did bloods again, and told us to come back in an hour. My face just dropped, i said i have to come back again. They said yes. Brody at this stage was getting really restless and starting to muck up. We went back to clinic and they again told us to wait. Brody played with the playstations, ate popcorn and rice crackers and watched TV. He was starting to get tired. He ran off twice, trying to go home to grandma's. At this stage my level of patience was wearing very very thin. Again time ticked on and No doc. We again went back to do the last bloods. Come back to clinic and waited again.
Finally the doc called us, spent 5 mins with us and told us to go and wait to be admitted into hospital. The lady at the desk said we could go home and come back at 7.30pm. So i jumped at the chance and left. We got home after 4.00pm and Brody and i crushed out for 2 hours. Grandma had cook us dinner and then left to go back to hospital.
Arrived at hospital, still very tired and patience still very thin. We saw the nurses at the desk and they told us the room number. We got there and we had a shared room. Which is ok. but not for Brody. As remember he dosent like strangers and the ward and nurses were all new to him as well. I also pay private health to cover for him to have a private room. That was the last straw, i broke down in tears and said this wont do, as i have had a bad day and dont need Brody to get more restless, Brody and i both need our rest. The nurse then tried to help us get our own room. I dont mind sharing but as some of you would know its harder to deal with strangers and keep them settled when other people are around.
Still i have nurses saying to me all kids do that! NO! ALL KIDS DONT DO THAT!! I have had another child and worked in child care for 17 years, plus have a masters in early childhood teaching. ALL KIDS DO NOT DO THAT! they might do it once or twice but not all the time and not to the same degree. You can compermise with other children, Autism kids cant. I then gave them Chantelle's - Brody's story to read. Thanks again Chantelle! Please check out Special stories for special children in the link on the side page. Thanks.
Sunday, February 14, 2010
String Day!
Today Brody played with threading toys and magnet fishing game. He love playing with Grandma's cotton roll and wrapping the string around and around me.
We still just stayed around the house doing bits and pieces. It was a very hot day today, which again means we cant go out side as Brody cant go in the sun, due to the meds he is takening. He has already started changing skin colour in groin and tummy, which is from chemo. He is starting to be a opposite to Micheal Jackson. They say he can get really burnt if he goes out into the sun. So like i said last time, there is so many things that Brody cant do, which makes life hard but its only for his protection, as any little bug or infection could end up deadly for him.
Brody is still eating us out of the house and drinking lots of water. He has been very happy and dosent mind going back to hospital as long as they dont give him a sharpie. I am not looking forward to it, as its alot of work and some days Brody's Austium runs you down. But i am use to coping with this by my self and when your a parent you do what you have to for your children.
So bring on tommorrow!!!!
Valentine's Day
Love my kisses and cuddles. I dont get them alot as Brody only gives them on his terms and when he feels up to it. But i have had plenty today. Hope every one had a great day for Valentine's Day.
Brody and I again stayed at home and did things around the house. We ended up having a sleep today. Yeah!!! My poor Valentine was sick and had to go home as he couldnt be around us but
Grandma, Brody and me had a foot spa and i did my nails. It was good to just sit back and do something relaxing and something for your self. As you dont get time to do things for your self, like a hair cut, foot spa and nails, so most of the time you feel like crap about your self. So now i feel that little tiny bit better.
Wishing everyone a HAPPY VALENTINE'S DAY. xxxxxx
Saturday, February 13, 2010
Rainy Weekend!
What a dull, rainy weekend! Did not do much at all except lay about the house watching movies, playing playstation and playing games. Brody is not allowed to go any where were there is alot of people or other children, due to all the bugs and germs. This then stops us from been able to go to the movies, shops, park, play centres and other things, so then the only thing left to do is stay at home again.
Brody is still eating lots of different types of food, which is good. All he would eat in hospital was yoghurt or custard and icy poles. Now he is eating cheese, Jatz, apples, grapes, chips, meat, pizza and he wants more and more pizza. Think i will own the pizza shop by the time Brody is finished.
Brody has still decided not to have a day sleep, but still sleeps all night cuddled up with teddy and mummy. Love how he wraps his arm around me and tells me to go to sleep!
Other wise its been a stressful weekend, worried about Brody's brother Luke, Brody's Great grandfather and Brody's grandmother. Life just seems to get better and better and i am about to loose my mind.
Brody is still eating lots of different types of food, which is good. All he would eat in hospital was yoghurt or custard and icy poles. Now he is eating cheese, Jatz, apples, grapes, chips, meat, pizza and he wants more and more pizza. Think i will own the pizza shop by the time Brody is finished.
Brody has still decided not to have a day sleep, but still sleeps all night cuddled up with teddy and mummy. Love how he wraps his arm around me and tells me to go to sleep!
Other wise its been a stressful weekend, worried about Brody's brother Luke, Brody's Great grandfather and Brody's grandmother. Life just seems to get better and better and i am about to loose my mind.
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