Very tired tonight. I took a sleeping pill last night as my anxiety levels were high and i knew i would just lay awake tossing and turning. So today I woke up even more tired than the night before and feeling groggy. Jayden woke up chipper at 6:00 am, but I have to say I never complain as every second is a gift with him.
He's eating a little bit now as we took his feeds off at night and he's having a bit for breakfast. This morning I made him pancakes and he ate nearly half of a vey small one! Very exciting. We are hoping we can get his nose tube out soon so he can look like a normal little boy again and no more stares! Yay for that. In order for that to happen though we also have to work out a way to give him his medications by mouth. I tried to give him his ondancetron by mouth tidy and he spat it out in disgust- no surprises there as it tastes disgusting. He has to have it every 6-8 hours otherwise he vomits. Have no idea when and if that Will ever stop. He also takes antibiotics every weekend for at least another 3 months and they don't taste too flash either. But we figure, food first then work on the medications. Hopefully if we get a win in both areas that tube will be out soon.
My niece noticed little eyelashes appearing around his eyes the other day which I'm very excited about as he only has one of the old ones left. Hopefully his hair will come soon too. Really hope I get to see all that happen. So worried he will be Sick again before I get all that and everything else I wish for. Oh my god, even when I think about some positives in the day the negatives just creep back into my thoughts. I just can't get away for it. No matter how hard I try to stay focused on the now I begin to feel terrified of the future. I am so very scared of that and I do try to not think about it. But that's just truly an impossible task. My mind just won't let it go. I watch him in the day, play with him, cuddle him and get moments of sheer pleasure being with him then within seconds they are clouded by frightening thoughts of the future. I shake them off as best I can but they are always there. I've never been so terrified in all my life as I am of losing my son. It frightens me beyond words and I'm spending everyday knowing that it is a very very real possibility. It just sux. I have no idea how to live like this.
I spent some of today sourcing places to get support from in the way of a parent group. I was hoping to find somewhere that provides support for parents of children with cancer where i could meet like minded people in a setting with councilling or something? Workshops or something like that? I know the cancer support group in cottesloe has workshops for carers there but not for parents of children with cancer. At least, that's my understanding. I'm saddened i didn't find anything as i really feel that would help but there doesn't seem to be a place in Perth that provides that however maybe I just haven't been looking in the right places.
I'm really tired now and finding it difficult to write so I think it's my cue to go to bed. He's asleep now, everyone is. Except me. I'm looking forward to snuggling back up to him. hoping I will sleep tonight.
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