Weight: 12.8kg
It is amazing how time flies when you are having fun! It is already a year ago that we were in Graz, so hopeful and ready to wean Tayden of the tube. And we did…for a while anyway! I have mixed emotions when I think about our time there. We went over with such hope, such dreams, such huge aspirations for our little guy to come back eating and drinking everything in sight and there is a piece of me, a year later that feels we failed. Because as you know, 8 months after being tube weaned we had to reinsert his tube, for medical reasons. I sit here and try to think what we should have done differently, where we went wrong or what else we could have done to ensure a different outcome and I cannot actually come up with anything we would have done differently. Did we fail? Maybe - at times we may think so.
But then I think of this morning, how Tayden got up out of bed, walked to the kitchen, banged on “his” cupboard and asked for something to eat. He drank a little bit this morning, about 30ml and ate a couple of bites of bread and a savoury biscuit. Would he have done this a year ago? Not on your life! So failed…no way! We have got a couple of hiccups in the path and we will deal with them as we do each day…with a smile and thank God that our little guy is looking so well!
So, we can look back and wonder but I prefer to look forward, to the future. Yes, we still have a peg but we literally use it now to top him up with liquids. He is drinking a little bit better each day, he is eating well (as far as we are concerned anyway) but we know that without the peg we would be camping out at the hospital, getting him rehydrated, watching him lose weight and wither away and perhaps do damage to his brain and growth. Is that an option, obviously not! This way we can take things day by day, if it is a good day, we don’t have to “top him up” with liquid and if it is a bad day, then it’s fine, we will give him extra fluids and look forward.
When will we take the peg out? Who knows, at this point it isn’t something that we are considering and our paed just gives us a wry smile when we mention it. We are just enjoying having more family time with Tayden, watch him grow up and experience new tastes, new things and become the most precious little guy that we get to spend our lives with.
I have to laugh at Tayden…below are some pics of him taken recently at a party. He was so excited to be there, rode his little bike up and down and had a ball. He even sat at the table and played with the party decorations, he looked so at home. Then everyone opened the party packs and started eating…and he was off, never to return to the table or enjoy the snacks! I could get upset, I could say ag no, when will he ever eat like a “normal” child and sometimes I do. But then I look at how much fun he had, the interaction with the other kids and the progress that he actually SAT at the table this time and I realise we are making progress each day. J How wonderful it that?
So, we will take things according to Tay’s timing…and enjoy the ride while we are at it!
Please drop me a comment so that I know that I am still writing to someone out there, and not myself!
It is amazing how time flies when you are having fun! It is already a year ago that we were in Graz, so hopeful and ready to wean Tayden of the tube. And we did…for a while anyway! I have mixed emotions when I think about our time there. We went over with such hope, such dreams, such huge aspirations for our little guy to come back eating and drinking everything in sight and there is a piece of me, a year later that feels we failed. Because as you know, 8 months after being tube weaned we had to reinsert his tube, for medical reasons. I sit here and try to think what we should have done differently, where we went wrong or what else we could have done to ensure a different outcome and I cannot actually come up with anything we would have done differently. Did we fail? Maybe - at times we may think so.
But then I think of this morning, how Tayden got up out of bed, walked to the kitchen, banged on “his” cupboard and asked for something to eat. He drank a little bit this morning, about 30ml and ate a couple of bites of bread and a savoury biscuit. Would he have done this a year ago? Not on your life! So failed…no way! We have got a couple of hiccups in the path and we will deal with them as we do each day…with a smile and thank God that our little guy is looking so well!
So, we can look back and wonder but I prefer to look forward, to the future. Yes, we still have a peg but we literally use it now to top him up with liquids. He is drinking a little bit better each day, he is eating well (as far as we are concerned anyway) but we know that without the peg we would be camping out at the hospital, getting him rehydrated, watching him lose weight and wither away and perhaps do damage to his brain and growth. Is that an option, obviously not! This way we can take things day by day, if it is a good day, we don’t have to “top him up” with liquid and if it is a bad day, then it’s fine, we will give him extra fluids and look forward.
When will we take the peg out? Who knows, at this point it isn’t something that we are considering and our paed just gives us a wry smile when we mention it. We are just enjoying having more family time with Tayden, watch him grow up and experience new tastes, new things and become the most precious little guy that we get to spend our lives with.
I have to laugh at Tayden…below are some pics of him taken recently at a party. He was so excited to be there, rode his little bike up and down and had a ball. He even sat at the table and played with the party decorations, he looked so at home. Then everyone opened the party packs and started eating…and he was off, never to return to the table or enjoy the snacks! I could get upset, I could say ag no, when will he ever eat like a “normal” child and sometimes I do. But then I look at how much fun he had, the interaction with the other kids and the progress that he actually SAT at the table this time and I realise we are making progress each day. J How wonderful it that?
So, we will take things according to Tay’s timing…and enjoy the ride while we are at it!
Please drop me a comment so that I know that I am still writing to someone out there, and not myself!