First part of our day we rushed to Centrelink to show ID so i could get a one off payment, Brody was sick in the car and had to rush back to the house to change him and wash his car seat. We had to be at the hospital before 10 to take bloods, which Brody did really well. They did a finger prick again, he was telling the nurse what to do. He loves the rountine and knows what happens.
Then after that we had to go and sit in the clinic, waiting, waiting and waiting. At this time centrelink rang me to say the one off payment was not approved as i have recieved a single parent penison before and on part carers pension now. It dosent pay to ask them for help.
While we were waiting Brody was really good, he only ran off once and sat down most of the time playing with his DS and watching the movies. We also saw the Bone Marrow lady, where we had to sign all the paper work. She told us his levels are too low at the moment to do the stem cell on Wednesday, so maybe thursday this week to wednesday next week. No result come through, but she told us that they would not use me or Joel for a match, but luke has passed 2 tests, we are waiting for one other test to know if he is a match. The waiting game again.
It was about 3.30pm when we finally got in to the treatment room to get his dressing change, thing that i put his injection in changed and then his sharpie. He did not like any of this and was crying and hitting me. Think by that time he was very tired. Sometimes i break down and cry too, as its so hard to hold him down still, when you know he dosent wont it and that it hurts. But i do try and be strong cause even though i have to be the bad guy, i know he loves me still.
We got out abut 4.30pm and went back home to rest.
We wish everyone a happy Australia Day and remember to say G'day to everyone.
I'm so sorry you are having to go through this, both/all of you! Thinking of you here in the Blue Mountains. I have a son Brody, who has Aspergers. And another son 5 with HFA. I can't imagine how hard it must all be. I am trying to think of ways I can help! Keep up the good work, best wishes, Toni
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