So we are an hour behind now.
But, we are at the half way mark - 48 hours to go!!
The end is getting closer, woo hoo!!!
There was a delay in my chemo... So we are an hour behind now. But, we are at the half way mark - 48 hours to go!! The end is getting closer, woo hoo!!! Oh what a day! Music therapy, a visit and present from Santa, new bloods to give me energy and cake for dinner! I loved spitting dinner out and not chewing it, but happily munched on the apple cake - the things mum and dad let me get away with while I'm in hospital! As I’ve mentioned before – this pregnancy has not been a ‘typical’ pregnancy – and that’s not fair! Because really, it has been a textbook style pregnancy. The baby is growing nicely; I’ve had good test results; ultrasounds have been normal; heart rate is normal; it’s all been normal, normal, normal! And yet, I’ve spent the last seven months stressing over absolutely everything. Was that pain normal; is that stuff normal; has she moved enough today; do I need to go to the doctor just to check?? I’ve not enjoyed this pregnancy – I’m uncomfortable; I’m in pain; I have to eat Mylanta all day; I’m not sleeping; everything is getting harder and heavier to do. My walk has become a waddle and I need help to get out of the couch! I’ve got pregnancy related issues that NO books or anyone I know has ever mentioned! And yet despite these complaints, we are happy and silently celebrating every day. Dexter was born at 31 weeks and 1 day and well… we all know what happened there! But, we passed that day this time, and we’ve gone further still. Today I’m 32+3 weeks. If anything should happen from now on, there is a really good chance things would be different. Feeding shouldn’t be as tough an issue, because the sucking reflex develops around 32 weeks. Breathing assistance should be minimal because everyday her lungs are getting stronger. Time in the humidicrib would be minimal because she is a good size. And best of all – if anything happens – my waters break, labour starts, bed rest is ordered or she just decides to come early – it can all take place in Wollongong. That is such a foreign concept to us! And, if anything happens over the coming five days, we are going to be at one of the best hospitals for children. Dexter starts round six tomorrow. This should be his last round. If it is not, some explaining will need to be done. Round five was hard. It took him longer to recover from that then it did his surgery. He has lost weight and his fluffy hair all fell out again. He refused to drink and wasn’t overly fussed on eating. He needed two lots of platelets – which leave him in pain for 24 hours. We had a quick trip to the hospital with suspected infection, but was thankfully only for a false alarm. It’s been tough. We live our days looking at the calendar – working out when we can and can’t do things and have everything crossed that we won’t need to be in hospital over Christmas. Only time will tell that though. He is such an amazing boy – I honestly don’t think I could put myself in his shoes and react the same way he does. He will be sick, but want to play. He will be tired, but want to walk. He will be poked and prodded and still give a smile. His laughs have gotten a little less frequent, but he is not an unhappy child. And it is because of his attitude, strength and determination that I find the strength to keep going. The cheeky grin he gives in the morning when he realizes that as some point during the early hours, we relented and let him into our bed. The little hands that are exploring more and more and that hold your hand so tight so that you can’t move. The pure cheek of flatly refusing plain milk now and only accepting flavoured milk (please note, we are not bad parents and it is only a very very small amount of flavour!). The conversations he has with himself at night, when he is supposed to be sleeping – that really should be discouraged because of the time, but that are encouraged because of the developmental benefits. The absolute love that he shows us and everyone around him. That’s how we make it. So here is hoping for a fast and relatively easy round six and for another few weeks of cooking time for Koko! Last minute safe kisses with mum. Once the chemo is in me, I am too toxic and can't have kisses. 96 hours of chemotherapy to go!! I'm sleeping at Ronny Macs for the first time tonight - I'm so excited! I even get to sleep in the big bed with just mum (dad gets the little bed!). Round 6 of chemotherapy starts tomorrow. We came up to Sydney tonight so we can hopefully start Round Six earlier in the day! (Then I can finish it earlier! It'll be 96 hours of chemotherapy.) I was a good boy for my cerebral palsy assessment today. They picked up on some spasticity in my right leg, but otherwise I did good. I'm tired and grumpy now though! I don't like having to sleep during the day. Most of my hair has fallen out again. I love it when Mum let's me in the big bed! She isn't such a fan tho! Dad took this of us this morning, he thought it was funny! I like cuddles and hate that in a couple of days, we can't have as many because of the chemo, so I make the most of it while I can! (The chemotherapy makes me toxic for a week after it finishes. Mum and Dad have to wear gloves to change my nappies and they have to be careful with my drool, sneezes and vomit.) Hi everyone. Today was much cooler, so I was much happier! My next round of chemotherapy starts on the 6th of December... |
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