Brody has a spotty rash!

Its been another hard week as giving Brody eye drops every 4 hours takes alot of work. I think by the end of the week he might just get used to it but then it will stop until next time he needs them. Its also very draining as we get woken up for the drops and normal checks. I turned every thing off today and tried to get a sleep, but no someone come in and woke me up, but a least Brody got a good sleep.

Brody developed a spotted rash yesterday, the doctor thinks it could be a viral infection but she will check him out again tomorrow. Other wise Brody is doing really well, he loves to eat Garlic bread for lunch and dinner.

Also seeing social worker tomorrow to check up about Luke's trip down for his tests. Brody and I cant wait to see him, as it's been such a long time and we miss him so much. It should be in the next two weeks, yeh!!!!!

Haven't learnt any new about the transplant, and i am starting to wonder what happens after Saturday, as that is our last day of chemo. So still so many questions to be answered. I say next week we will have to come in and check his bloods, and i say they will give him a week or so to recover. Last time he had this chemo he had high temps and we spent two weeks in hospital, so could turn out the same. Who knows, you cant plan or do any thing!!!

Feeling very worried and scared about transplant, as i have no idea how Brody will cope being that sick, that he needs a nose tube and will have mouth sores etc. He has done really well to cope with everything now, but this is going to be totally different. The Autism hides the way he feels, the only way i know if he coming down with something is he gets more aggressive, but he is still the same old Hyperactive child he normally is. Therefore the transplant will be hard as i don't think it will be to good if he is still hyperactive as his body will need to rest to recover.

Busy Busy!!!

Tuesday morning we had Chris from ABI ( Autism Behaviour Intervention) come and do his magic with Brody, then we had to rush of to hospital for bloods and lots more waiting around. Yeah we got in for our next round of chemo. Then we were so tired and ready to go to sleep, but wait there's more, Brody has to have those horrible eye drops every 4 hours again. Oh No!!! Its going to be a week of no sleep, and me feeling tired and moody. So proceed with caution!

Wednesday, another busy tiring day, as ABI did their magic again and we talked about some ideas we will be doing to help Brody with transplant. Also had a training doctor come to ask as some questions for her study. Then another new doctor come to ask about Brody's history and about his fits, as we will have to see a Brain doctor for a change in his fit medications for transplant. Brody also had two lots of chemo today and eye drops every four hours, sometimes good other times not so good.

One of the darling nurses from our favourite ward gave Brody a signed poster of a Holden racing car driver. He loved it and made me hang it up straight away. Then the lovely Lisa come and told us about the sprint cars here at the hospital, so Brody got to go down and have a roll in one. They also gave him a T-shirt and some more posters. Wow, it was a day for race cars. Brody had a ball and again made me hang up the poster.

We did not get our nanny nap today, so still very tired. Grandma, Grandpa, Auntie Mary and Uncle Ray come to say hello for a short visit.

Brody is doing really well, still eating and getting into trouble. But we still have a few more days of this and already he is saying he wants to go home, back to Grandma's.

Wonderful Week with no Chemo!!

This week has been such a busy week, with with all different things happening. On Wednesday, I called into the hospital by myself to find out about when Luke has to come down, as i need to plan for this. Doctor said in the next couple of weeks, so we are very excited to have him hear. I also saw the social worker and she can help me with Luke's air travel down. She also mention for me to use their helpers service to look after Brody for a while so i can have some time away during transplant. I said thanks but no thanks, as if you are not trained in Autism and have no idea how to look after my son, well i would rather do it myself. As i have said before other people looking after brody that dont know what we are doing will undo all our work and make it harder for me as he is not getting the care he always gets. She understood, and said but if there is any thing else you need to just ask her.

Thursday we were to go to hospital to start Brody's chemo. We were packed ready, but then when i called the hospital there was no bed. I left every thing in the car packed. Brody was excited he didn't have to go. We had to call again on Friday.

Friday came, what a day that was, we had to go to the hospital no matter what to check Brody's bloods. We did blood test and then watched everyone come and go, come and go. Still no doctor. People were coming in after us getting their bloods, waiting, see a doctor and then going home before us. By this time my patients were running low. Why were we not seeing a doctor?
I found out they had no doctor to check in patients, so the other doctors did not want to see us as its not their job today to check patients in. What? I saw three doctors and not one of them could see us. What a joke, as they have all seen us before. Was thinking it was because of Brody's behaviour with them.
At 3.30pm a doctor finally came and saw us, to let us know that his bloods were too low for him to have chemo. So we waited for nothing, if they told us this in the morning we could have gone home. Going to take this matter higher, as no one should have to wait this long in a hall way.

So because i was packed and at this time loosing my mind, I contacted Bill and told him not to come down as we were going to go home for the weekend. Brody was so excited!!!!!!
Brody has wanted to go back home for soooooo long, so i thought he might never get the chance again, and this was the perfect time to go.

We arrived home on Saturday afternoon, Brody raced out and run around the place looking at every thing. Brody feed Red the horse, climbed his ladder, only first step, and then collected sticks as he wanted a bon fire to toasted mushrooms which is really marshmallows.
Our first nite in our own beds in 7 months, oh bliss!!! I fall fast asleep like a baby! and so did Brody from excitement of beaning home again.

Sunday Pete and Bill took us out in the boat and Brody got to do some fishing for the first time. He really enjoy it and even pointed out the type of fish he wanted to catch on a sign.
When then come back home and got Brody's favourite meal PIZZA. The weather was rainy and cold so we ate our pizza and watched movies. Even though we were stuck inside it was so nice to be back home and have that freedom we don't have any where else.

Monday morning we left Nabaic to go back to Sydney, it was a sad time as we did not want to go but we knew we had to as we have to be back in hospital on Tuesday. So now we are refreshed and recharged and ready to fight for another chance to get back home.

For the next couple of month or so its going to get very busy for Brody and I as treatment and test are going to be started, Luke will be coming down for tests to start the ball rolling for Transplant, so i apologies if i am not contactable or have not written on Facebook. But as some of you guys know living with a child with Autism, having no partner to help, its hard to do every thing. And at this time Brody, Luke and me are the first on my list. Sorry to all. xoxoxox

Heart test and Clinic Visit!

Domenic and Ethan were here first thing this morning, as school starts back. Brody then didn't want to go to hospital. He was yelling, crying, "I hate this hospital". He was so stubbon, i had to pick him up and force him into the car, as nothing would work to try and get him in.

After awhile he was ok, then like normal runs off into the hospital, we me trying to keep up carrying the heavy load of stuff we need to take just for half a day. Couple of times i have lost him, but found him after i have looked around the place to find out where he went.

Brody got his bloods taken today, all were at a ok level, but still very low. They normally do a transfusion if your blood is lower than 80, Brody's blood was 77. I dont know why they didnt do a transfusion, but it could be because he has new bloods, which will make it rise as days go on.

He also had a Heart test today, which turned out all normal. So Chemo starting on this Thursday. We will be in for 6 days. Hopefully i will also find out more about the transplant too.

Brody was so much better today waiting and seeing the doctor, even though she did not check him out. After all this happen, we had to wait that little bit more as i had asked to see another doctor about the transplant. We waited and waited, Brody turned back to his old self, hitting me, biting me, kicking me and even spitting on me. I was not going to take it any more, so i told them not to worry and took him home to go to bed. I think he just had to much waiting, as usally he only does things like that when someone is trying to do something to him. He has only ever done this to me at doctors, but never while waiting or at home.

Love how people judge you for your child, but they have no idea what it is like living with a child with Autism. If they are not in their normal routine or get out of their routine for a little while, the parents have to work twice as hard for a week to get them back into rountine. So for me and Brody this experinece is alot of hard work and we both get so frustrated.
So unless you know what we are going through dont judge!!!!

Lane Cove National Park!

Brody has been asking to go on a picnic for so long, but it has been to hot, to wet or he has been to sick. So today was the perfect day for Grandma, Grandpa, Brody and I to get out and do something different. So we decided to go to our lovely Lane Cove National Park.

As Grandpa and I used to work there, we knew of the nicest and quite spots with out any people around to go to. We pick a beautiful spot with shade, picnic table and a view of the river. It was perfect.

Brody was so excited about going, he hopped in the car before we even packed it. He had his sunscreen on, sunnies for his eyes, hat and his toy plane already to go. We all had a wonderful time as its the first time in many years, as there has been so much sadness in our family. It was a memory i will cherish.

We come back home for a big sleep and get ready for our clinic appointment for tomorrow.

Lane cove National Park is the best park. You can see its natural beauty for miles, can hire row boats, book a picnic site, ride bikes or just rock up for the day. They also have the Lane Cove River Tourist Park, where you can camp, rent a cabin or bring your own caravan. It is so close to the city, but seems miles away as you are surrounded by Australia's beautiful bush land. Its a must see!!!!

Clinic check up!

We went off to the hospital fully prepared for waiting and prepared with all the visuals, to explain to Brody what the doctor would be doing. Could not believe it, today was the first time we didn't have to wait to long. Brody got his bloods tested, and then only waited for a little bit to see the doctor. In the doctors i show Brody what was going to happen, as he asked several times about getting a sharpie. He seem to understand and coloured in and played his game while i was talking to the doctor, but as soon as the doctor wanted to check him over, the hitting , kicking and yelling started. Tried to explain again and even bribe him, but i think because she was another new doctor that we have never met, he just wasn't going to do anything for her. It was hard, but we got through it, just like we do every time we go.

Brody's results were low counts, but not low enough for any transfusions. We need to go back on Monday to check them again. Then also maybe next Thursday we will be back in for another 6 day stay. Brody then got his dressing changed, which he took it off all by himself, and then went crazy as he hates the feeling of the cold sponge cleaning it.

The day finished within 2 and half hours, big difference from 5 hour visits for the same thing! We then went home and on the way got Brody Mac Donald's as i had promised it when he was seeing the doctor. He is still eating like a horse, and still wants his pizza and Garlic bread.

Brody and i then had our nanny nap and when we woke we did our activities with Grandma, and Brody did really really well. I was so proud of him. Thank you to ABI, for all there help. xoxo

Our week!

Our week has been the normal week of staying inside at Grandma's watching TV, washing, playing games, nanny naps, worrying and organizing finances. Also we had the lovely crew from ABI come on Monday, Tuesday and Wednesday. They have done so much already to help Brody with his behaviour problems, helping him with school work and helping him to accept things.



Brody has change so much, he is not that hyperactive child he was before this experience.Brody used to run around the farm chasing the dog and chickens. Brody could not sit at a table to do work or play with any toys he had. Brody would jump from one activity to the next within a few minutes. Brody also had difficulties at his Day care and was also alot of hard work at all his extended programs he was attending. But now he has calmed down so much to the extent he sits and colours in and sits at a table to do some activities. Brody doesn't like to go outside and run around the back yard and has problems with any physical activities. I believe the chemo has calmed him down alot and with the help from ABI we are seeing a different Brody. I wonder how he will be when his treatment is all finished? Will he go back to that hyperactive child or will he stay settled. Either way, I will love my son every day and continue to help him in every way, as i know that we, like any parent with a Autism child, will have these battles for life.



Friday is check up day, not looking forward to it! Rather be at the beach swimming with Brody and making sand castles.