Hospital Party Day, and Clinic Intragam

Went to hospital on the Friday for Brody's Intragam. We ended up having a great day, as it was Party day for the hospital. Brody got to see my favourite superheros and Santa.

Brody and i also saw our Wonderful friends from Variety Ward. They might not know it but they all really mean alot to us, as they were always there for us, even when i had my bad days or bored them to death with my long talks at night. LOve you all xox

His Intragam went well, i did get to see the doctor and found out GREAT NEWS!!! Brody's cancer has gone down again by one. So we are still hoping it will keep going down. Next Bone Marrow will be in December.

Brody has been great, we have start halved the steroids now, so hopefully that will kick in and he will have less side effects.

Brody is back to clinic on next week, for check up.

Clinic check Up!

Another week has past, and really there is no news.

Brody has really done well with his poo's and wee's. Its great to sort of have it under control before he starts school.

Brody is now booked into his special unit school, so should be able to pick up all his gear for next year soon. I cant wait!!!
He also has had his wonderful teachers out from the hospital and ABI. ITs great to have the help, as having looked after him for 24/7 every day has really tried my patience's.

Went to clinic today, but no results from Bone Marrow test yet. He has to go back on Friday for an Intragam (which is blood product Transfusion). Also they lowered his steroids as requested by me, as poor Brody has gained nearly 3kg in two weeks and is having a few side effects, such as lack of sleep, aggressive behaviour and eating grandma's chicken soup nearly 4 times a day with nearly 6 slices of toast each serve.

Otherwise he is doing really well, Its funny as he has got older i can really notice the Autism more. As yes some areas he has approved, but others like repeating him self over and over and having the same things and routine is so much more there now. Think it makes him feel secure as well, as he said to me today, you will always be with me mummy. I told him, i will always be with him.

Bone Marrow OP!

Brody has been alot better now he is on the new steroids for his gut. He hasn't been sick and eating lots more again. Grandma's chicken soup is back for breakfast, lunch and dinner. LOL

We have had alot on with the school teacher from hospital and ABI. He really loves when they come.

I also enrolled him in his support unit at his school, so soon i will be able to get his bag and uniform. I think he will really enjoy it with other children, as he has been isolated for so long now. I wont know what to do with myself, when he is at school.

Today he had his monthly bone marrow operation, so results hopefully late next week or the week after. He did really well, as he had to wait for a long time without food.

Otherwise his blood levels are doing great this week, and he seems really happy. He is such a big boy now, as he only wears his nappies while he is asleep. Its cost me a mint, for his rewards but it has done the trick.

Because of Brody's Autism, he gets very fussy, as he wants what he likes, and nothing else, so most of the time, i have to ask him 6 times to make sure i am getting the right toy or what ever, as if i don't, he wont even open it or look at it. As they have interests and you need to always give him things that interest him. Its hard work, keeping up with it, but knowing Brody i can judge pretty good.

So until next weeks appointment, we don't have much on. Hope you all have a good weekend. xox

clinic Visit

Since Brody finished the steroids i have watched him starting to get sick, loose weight, eat less and the skin rash and bruisers are starting to come back a little bit. Its like all again, when he went off the steroids last time and ended in hospital for a while.

Doctors also agree, so have given another new medication which is a steroid just for the gut. So hopefully this will help his gut and he will be less sick and eat more.
Also some of his levels were really low, which is a sign that he could get sicker and need to be extra, extra careful and keep him away from others.

Next Thursday is the bone Marrow test, for the month, so we are hoping the cancer level has gone down again, and hasn't gone up.

Urgent!!!

Brody has been doing such a great job going to the toilet all by himself, this time he has to do two poo's on the toilet to get a reward, as his rewards cost around $70 for one game. Ouch!!!
But its worth it if he keeps doing poo's on the toilet and i get him out of nappies.

I had to go to the shop to get a new reward as he has done one poo, just waiting for the next, so Grandma and Grandpa were watching him while i went to the shop. I just got a park and walked into the shopping centre when the phone rang.

Grandma rang, as Brody was sick and his NG tube (nose Tube) come out throw his mouth, Brody was stressed and only wanted me, wouldn't let Grandma and Grandpa touch him. So off i, raced home, to find they had calmed him down but Brody was sitting there holding NG tube in one hand and the NG tube still going throw his nose and taped on his face.

I went to pull it out, but Brody wouldn't let me, plus i had to get a new one put in today so i could give him his meds. So off we went down to the hospital to get it out and get a new one in.

He did really well as i think now he is sort of used to it all, but mind you, his good was still holding him down, sitting on top of him and listening to him cry and scream. But a least he didn't kick, punch and swear or call the nurse or me anything. WEll done Brody!!!

On the way home, him and GRandpa stayed in the car and i run into the shop to pick up two rewards for him, one for the toilet and one for brave work. $160 later......... we went home.

So back to hospital tomorrow for our normal check up and hopefully no more surprises!!!

Still staying at home and not doing much. Grandma got me to work and was washing walls and cleaning windows. As they have had so much happening the last lot of years they haven't had time to do the spring clean.

We have been trying to toilet train Brody again, as before everything happened we were toilet training him and then when he had to go into hospital we left nappies on him, as he lost control and got to sick sometimes to go.

The last two days he has done wees on the toilet without any accidents and today as we had a huge surprise for him, he did poo's on the toilet. Yeah!!!!! He was so excited he got his Wii Pokemon game. Lets hope he will keep it up, so he is ready for school next year.

He had a bit of a sore throat tonight, which we think its from eating Taco's for dinner yesterday. As he never chews his food up that well and swallows large bits down his throat. So we think the taco might have scratched it. Well we are hoping that's what it is, he has no temp, so hopefully it is it.

Its a big couple of weeks for us again, with school teacher, ABI, hospital visits and lots happening in our private live too. Already tried but just making sure my little man is happy and loving his life.

My thoughts go out to our Family as we lost another person close to our hearts, Rest in Peace Aunty Chris and thoughts are with her immediate family. xoxoxo

Clinic visit

Yesterday we had the lovely ABI staff out to start working on our next block with Brody. She was Happy to see Brody and Brody was happy to see her, as he ran to the door and cuddled her. We worked out what we would work on and how to go about each goal for the program. Its going to help him out so much and get him ready for school.

Today at clinic, we found out that Brody has inflammation of the hip and lower back, which would put him in some pain, but his bones are ok for now. Which was great news.

I also found out from the Department of Education that Brody has his placement at a special unit school which will be close by to Grandma's but they have to finish things up before they tell me which school.

So every thing is moving ahead, hopefully this good luck will last