Check Up! and A sad Day!

Brody's check up went well, his echo (Heart test) was normal. His levels were low, so might need transfusion next week. They have booked him in for next Wednesday to go back to hospital for chemo depending if his levels are ok and they have a bed. We again waited around for long times and we were there for 5 hours.

Brody had performed again for the echo test and dressing change and seeing the Doctor. Brody has a few bruisers as his platelets are low and he keeps bumping himself when he performs. The Doctor said no wonder why he has so many bruisers, He is so active! I told her, no its because he is in this small room and you want to touch him and talk to me. Other wise the day was tiring running around chasing Brody through the halls of the hospital. We then come home and went to bed early.

Mum and dad come in and woke me up at 1.00am, as my grandfather had passed away. We had a few cries and had a talk. We then had to fix pop up ready for the doctor and undertakers to come and collect him in the morning. This might seem horrible but this experience has certainly toughen me up, i think i am prepared for anything. Mum used to be a nurse and she knew what had to be done, as if we left him he would of been to stiff for the undertakers (sorry if this offends you). My pop was a proud man and we wanted to fix him up for him too, he then looked so peaceful. Our family was very close to pop as we always went to visit him as kids and my two beautiful boys loved their great grandfather as well. Its been a emotional day, fixing the house up and sorting pops belongs out. We love you pop and will always miss you.xxxxx

Sleepy Day!

Brody was tired all morning and tried to fight it, but i ignored his behaviour and he put himself to bed. The only thing wrong was he missed out on seeing Mary-Ann From Aspect. I thought his sleep was more important and let him sleep as he hasn't been having day sleeps much.

While he was alseep Grandma let me pop up to the new shops at Rouse Hill, as i needed new pj's and nappies. I felt so out of it. I walk around seeing women having their nails, hair and wearing all the trendy stuff. They looked great, then i would look at myself and think, i have really let myself go. But thats the thing its not that i have let myself go, its beause of the money, time and the love for Brody that i think Who gives a **** what i look like! But it does make you feel like crap and this experience is very hard! One of the other mothers in hospital asked me, when do you get to do things, I said i dont! As most of the children have both parents doing shifts because they are not seperated. So beening a single mum and having a child with Autism makes this experience extra hard. I dont wish it upon anyone.

Brody is still doing ok, temperature normal, no sickness, eating and drinking. He again had a normal day at Grandma's house. He ate lots of dinner as grandma cooked chicken on sticks, chips and herb bread. All Brody's favourties. He was really happy.

Hospital tommorrow for check up and a heart test. Have to leave early and most likey be back late, so i will not post anything tommorrow as i will be too tired. Back again on Saturday.

Behaviour Problems!

Brody had a great day! The brilliant and lovely lady Jill from ABI come to help with Brody's behaviour problems. It was fantastic and what Brody needed, but as we lived so far away these services aren't available. Jill helped me understand why and what to do when he does certain behaviours. We also did lots of role play to help Brody with his hospital things, like blood pressure, dressings and sharpies. We all had lots of fun. Jill was also teaching Brody what the word Brave means, and we had to be brave to open a toy toilet that shots water. Brody thought this was real funny and made us be brave all the time. The strategies that Jill gave me will take time and need lots practice before we see any results, but she believes we will. Hopefully staff at the hospital will also do these strategies as Brody will then go back to his old ways or worse and then its like starting again when he comes back home. But i will be there to push them too.

Thank you so much Jill, for your work and support and just beaning you. Thank you my dear friend Chantelle for introducing me to Jill. xxxx

We then just had a normal day at Grandma's, doing activities, watching TV, PlayStation and going for a drive to pick up pop's car. Brody is still going well, a little bit moody today, but other wise he is doing fine.

Strange Day!

Today Brody has only ate toast with Jam and had all sorts of different drinks. He has felt like other stuff and i make it for him and then he dosen't want it. I think he has felt a bit off, but its hard to know as he cant express how he feels. The Autism lady will be making up a feeling chart and i hope this will help him to express his feeling a lot more.
He had a strange day today as grandma and grandpa had to go to the doctors for grandma's foot as it has swollen up with fluid and she cant walk on it. She is in a lot of pain and Doctor said she might need a operation to fuse her ankle together. This was not good news!
But because Grandma and Grandpa wasn't here, we had Auntie Dianne and Uncle Peter to watch over my grandfather, so Brody was active and full of beans as strangers were here in the house. He could not settle and ran around the house for most of the day. Otherwise he is ok and has now gone to sleep early.

The video i have posted is of Brody doing a drawing, to help him learn how to sit and do this. Brody has no idea how to play with things or even begin to draw things, so he needs to be taught how to, this is part of the Autism. Most children play with play dough and make things Brody cant not do this but he is getting there. There is alot of work and knowledge you have to have to help Autism children and if you dont you will find they will just be stressed and wont learn the right things. Hope you enjoy it!

Out of Hospital!

Sorry everyone for not writing the blog up the last couple of days, but we were still stuck in hospital and my wireless internet broke and the hospital computer were also all broken.

Brody is still doing well, the chemotherapy he received had to be flushed out of him before they would let us leave the hospital. Saturday morning Doc's said should be able to go home, we waited till the afternoon for the results from the blood test. It turned out to be 300. So no going home and had to kept flushing his body with fluids and put medication in his cords to make him do more wee, wees.

Sunday morning at 6.ooam they took bloods again and Doc said this time for sure you would be going home this morning, i packed up everything ready to go as the Doc said no we wonted need to stay. He was wrong, we got the results back at lunch and they were still at 300, so Doc said double fluids and test him again. We then had to wait till 3.30pm for the results and found that they were still too high. The Doc was so sorry and explain that Brody was at the very slow list of passing the chemotherapy drug. I said it didn't surprise me as Brody always does things either over the top or at the bottom of the scale. So we had to unpack again and stay the night.

Brody has been quiet well through all this treatment as one of his doctors said to me most kids have a long delay after the first treatment but Brody had his treatment moved forward. The Doctor did warn me that the next block of treatment is very strong and will find him get more sick then. So i am not looking forward to the next visit in a couple of Fridays.

Brody is still happy, but he is not the old Brody some of you would remember, as he is less, less active, lost more weight, dosen't like going outside because of the sun and he has an obsession about ants, (Think that started at Brody Day care). He wont sit or stand near one ant, so there is no taking him outside for a walk or just to get some fresh air. Some of his problems are because of been isolated from children, outside and effects from the chemotherapy. The Autism also plays a big part of what is happening in the day to day events. I have noticed more and more the Autism as he cant just run around and hide it. I took a video of his flapping his arms around to show you but will have to wait till i get my computer up and running. Brody would always do this but with play, so hard to know if it was the Autism but now as he cant play he is calmly sitting there and then just has to moved his body around, he does this often.

The next time we go is next Friday for a check-up and a heart test. Which is to see if the chemotherapy has effected his heart. So hopefully we have nothing wrong with him until then, as the chemotherapy he just had can effect his levels for the next 2 weeks.
I am sorry if this week i am not on but i have other worries as well with my grandfather, and i need to be there for my mum and dad, who have been nursing him all this time. They too have had a hard time with only loosing their daughter (my sister) 2 years in July and now to loose my pop and have Brody sick, Their supportive and wonderful parents, and i need to do this for them too. Thank you for understanding. xxxxx

Still in Hospital!

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.

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.