Friday, 16 November 2012


It's Saturday morning and my scrumptious little man had me up at 5 am again. But how I love these early mornings now.
Sadly, He vomited after his milk again this morning but then had his cup of tea and breakfast that he managed to keep down. We then headed over to the park still in our pjs for a play. Not Likely to run into anybody at that time of the morning and what a beautiful time of the morning it is. Every time I come over to this park I think about how grateful I am he is there with me. Before jayden was diagnosed we use to take the kids there everyday and jayden would love it. I remember like it was yesterday the first time I took the kids there without him because he was in hospital and how gut-wrenchingly sad that time was. Now I walk over there with him and I'm just so very grateful he is with me, holding my hand and chatting away.
I noticed today his hair is growing back. He has a millimeter or two of hair all over his scalp now, but you have to look closely to see it because it's so fair. Very exciting. I can't wait to see it get longer and then him look like a normal little boy again.

Dr nick had rang me yesterday to say that both Dr Goldman and Dr Chang had reviewed the MRI pictures and agreed its not necrosis but gliosis demyelination. It was also agreed that Jayden be given a course of steroids should his symptoms worsen. I'm now watching him like a hawk for any changes at all in his behavior. In some ways I just wish they would start them now because then I would at least feel like something was getting done about the damage. It's difficult to just 'wait and see'. But Nick wants us to wait a week and when he gets back from his trip to Brisbane he will start Jayden on steroids should his symptoms not go away by themselves.
His symptoms meaning his vomiting And his uneasiness on his feet. Of course if they worsen before then we have to have Him seen by a doctor and the steroids started.

So I'm watching almost every little thing he does and hoping nothing changes. He's definitely not as happy to walk all the time as he was before and often asks me to pick him up. His walking has never improved from when he first started to walk again back in June. He still walks like he's just learnt, wobbles and if he turns suddenly will fall over. It's frustrating to watch as I would love to see him walk well but Nick said he may always have trouble with that. He's still vomiting and Nick believes that could be one of the symptoms of his damage which he hopes will cease with time.

Its a few hours later and danny and i are driving around trying to get jayden to sleep as he's very tired and there is no way he will go to sleep in his bed. However we have decided we need to get a plan together to sort that out with summer coming up.

My sister Linda is down for the weekend and she called in this morning to see us. Fabulous to see her with her positive and bouncy personality. the kids love her, how could you not? Jayden particular loves her and is always talking to her on his pretend phone when she's not here- very cute. so he was over the moon to see her and spent the whole time that she was here siting on her lap. So happy for him that he has Aunties that love him so much.

It's a hot day and too hot to be sitting in the car but hopefully by this time next week we will have his sleeping sorted. Hard to get him in a routine when it's been so out of whack for so long but we know we have to try.

1 comment:

  1. I am so, so, relieved to hear that it is not radiation necrosis. Obviously still not "good" news but hoping his symptoms lessen. Poor little man.
    Wonderful news about his hair! Very exciting.You must be thrilled.
    My Gav also had trouble with being steady on his feet, and fell down a lot. He is still not 100% rock-steady but has continued to make slow improvements over the last two years. Being in a specialized physio program (Cuevas Medek) has really helped him. We also bought a mini trampoline with a bar for the house, bouncing on that every day really increased leg and core strength. Like Jayden, though, he didn't want to walk much for a long time and would tire easily. He is better at that now, thank God, because I was getting tired of carrying him around!
    Glad you are enjoying your early mornings in the park with him - such special times together.