Games Day!

Brody is coming along so much better with his eating and drinking. He ate about 30 Jatz with butter, grapes and lots of water. We had a day fill with playing playstation 1, playdough, cutting and watching DVD's.

Again he loved having Dom and Ethan here before school, as they all sat up at the table and ate breakfast. My sisters husband drops them off at grandma's so he can go to work and grandma takes them to school. As some of you know i lost my sister a year and half ago to a rare cancer.
We all miss her very much!

We have to go back to hospital tommorrow to check bloods and a check up. Then we get a little break before time again in hospital for a bone marrow operation(this is to check if chemo is starting to work) and intense chemo. So Brody and i will enjoy our time away from the jail house while we can. Other wise we are trying to start other services for his Autisum, so he dosent go backwards and keeps moving forwards. Thanks to Chantelle, i have a few contacts but as she and i have found it is very hard to get people to come to hospital or the home. I try my best at teaching him (as a Early childhood teacher) but he wont listen to mummy. What child does?

Thank you again to all those people that have put money into Brody's fund, as this will help so much. As you can imagine i still have the same bills i was working for and now more. So thanks again. Even the little bits go a long way. LOve you all xxxxxx

Lazy Day!

Today Brody and I had a very lazy day, sleeping and sleeping and more sleeping. He played games on Luke's old playstation and went fishing in a bowl full of water. Brody really enjoyed seeing his cousins Domenic and Ethan this morning before grandma took them to school. He wanted to go with them. As he really misses his school and friends back up at Forster.

Brody is eating alot better today and drinking more too. He is still less active then he use to be and has lost around 5kilos. His nose is still running alot, so hoping nothing will come back. But he is still his happy self.

My friends Jess & Jai popped in on their way home back to forster. Jess made me a beautiful scrapbook with all my photos in it. What a wonderful gift to give me, it nearly made me cry. Thanks Jess and Jai. xxxx

Day 13, Back to Grandma's

Brody got the news that we could go home and he was jumping all around the room like a hypo kanagroo. He told the nurses to take off his cords and let him out. But we had to stay around to wait for grandpa to pick us up and fill the paper work out and make his appoinment for friday. So it wasnt till after lunch we got home. Was a bit scary, as i now have to think what i have to do in the real world and as we have been isolated for so long the real world scares you just a bit. It aslo makes you sad as you look around and see everyone doing their normal day to day things and you just wish we could do that too.

The Doc's dont still know what caused all of his problems, as it could just have been from the meds or the chest is the number 1 thing they are thinking. We just have to keep an eye on him and take him back if any thing happens. His leg is alot better but still a bit stiff. I have to continue with excersises for him.

Got home to grandma's and Brody had a sleep, i tried but had hospital people still ringing me. If i dont every answer my phone it is because i am busy or trying to get sleep, so please just leave a message and i will try ring you back.

All Brody wanted was PIZZA as some of you know he has an obession about pizza. It was the first time he has eaten normal food for 13 days. Most of the time he has only wanted custard and yoghurt. I was so happy that he ate something more solid. (see pictures above).

Day 12

We started packing up to go home, as the Doc on the weekend said Brody was doing well and he would be able to go home. That changed as the Doc's had their little team meeting outside the room. Then they dont even come in and tell you what is going on. I had to ask Nurse to find out for me. Next time, i am thinking of standing out there too. Any way, yes we had to stay again. Brody was not happy about that and again would not do any thing the nurses ask. Brody is eating better and going for longer walks now, still no temps and still of the oxgyen. Doc's just want to keep him on meds a bit longer and watch him, as they still have no idea where the infection started. They think it could be the chest but are really unsure. Better to be safe then sorry. So unknown when we will be able to go home.
Took Brody to starlight room where he played the playstation. He really enjoys the games. Only stayed a little bit as his machine started to beep. We played cars and Ben 10, watched DVD's and had a very long sleep. Its a lonely life but we have each other.

Again had more people comment on Chantelle's "My Story for special children", see advert in side coloum. Its the best thing as it is helping people really know Brody.

Day 11

Brody is getting better and better, still no temps and now dosent have breathing problems. He has also been to the toliet twice. (well done, Brods). He has been cranky pants all day, he told grandma and grandpa to go home, he hit a nurse and wont do what they want. I took him for a walk but he just cried and wanted to go back to his room. He dosent want to do anything except sleep and watch DVD's in bed. So today we havent done anything and with the rainy wheather we have both felt tired. The weekend Doc told us that we might be able to go home to grandma's again tommorrow. Here's hoping as Brody and i am so over this. The only thing i hate is its not keeping him in a routine and every time we come in and out, we have to start a different routine each time and go to clinic for different people and different things. This makes it so hard for an Autisum child. As they like routine, familiar faces, and know what is going to happen. It makes them feel secure and thats why he only wants his mummy to do every thing.

Weird Day!

Brody is much better now he is on the high meds. Still no temps all day. His leg is much better but he hasnt gone to the toilet in 6 days, they have given him something, so hopefully soon he will go. Also still on the oxygen while he is sleeping and he is sleeping alot.
Bill was here today with us, he watched Brody sleep while i got a jail free card to go tell my dying pop that i love him. I am so glad i went as all he every asks about to everyone is how's Brody.

They say bad things happens in 3's, well two things happen to me today, 1st i fell over at the front entrance of the hospital and 2nd thing was that i got stuck in the hospital lift and had to call for help. I am scared about what is going to happen next? as the day is not over yet!

My friends from Lane Cove (Jo,Jo and Chris) came to visit today, while Brody slept through us laughing, we had a good time catching up. It was good to talk to friends as its hard to make friends here, not as good as it was making all my wonderful friendships at John Hunter Hospital.

I have started getting Brody out of the bed and taking him for little walks up the hall and back, as he gets tired really easy but needs some sort of physical activity, so he is not just sitting in the bed developing sores and becoming weaker and weaker. Thats about it for today, nothing much happens on weekends.

Bone Scan- Day 10

No temperatures!!!!! Brody has had no temp all day and all night last night. We have to wait 48 hours with no more temps till they say we can go home. But we still might have to wait as Brody is still on oxgyen when he sleeps. His leg is getting better, as he could move it and walk around, with a limp, very slowly and while holding my hand. He has started to look better and be more himself.

Brody had to have a bone scan to see if the infection is in the bones. We walk down to the room where they gave him a liquid in his cords and then put him ontop of the machine. (As seen in pictures). Brody hated this, like Austium children he hates been touched and held down and wrapped up. Brody was ok at first but then screamed and yell as the man taped him up and held his head, so he would be still. It didnt really work, so the man said bring him back.

In a hour later i had to give him a med that would clam him and put him to sleep. As my friends found out, (Shelly and family and Vicki) this was a big effort for me to do. Brody would not take it and i had to hold him down and put it into his mouth. He can swallow tablets with no worries but will not swallow a liquid. The nurse and i then took him down again on the bed, he fell alseep and was so still for the scan. But his bladder was too full, they could'nt do the scan. We had to go back again when he had done more wee wee's......

Two hours later we took him down again, on the way down Brody played us a song with his gutair while singing save a horse ride a cow boy. We got to the room and he had to be taped up again. He was wiggling around trying to get free. It is hard to watch your child go through this as you know they dont like been tied up and wrapped up. But you have to learn how to be cruel to be kind in this situation as they have to run these tests to help him. I just hate begining the bad guy all the time. The scan was then completed, Yeah!!!! and we went back to his room. All the effort made him tired and he went to sleep.

We have no more results and still dont really know what is happening. My wonderful man and Brody's step dad (Bill) come and gave Brody a pet fish for his room. Brody called it Jo, Jo after the mean man on the powder puff girls.