Weight: 11.8kg (100gm increase since Graz)
It is amazing how a couple of days can see such a turn around in our little man! Since last weekend, we have been struggling to get Tayden to drink, using every trick in the book to try and get liquids into him. His eating improved as the week went on but the drinking has been a challenge throughout the week, causing me to run out and buy hair colour to get rid of this grey!
Last night saw him deciding that Coke floats were cool and although his granny isn’t too keen on the Coke (which is totally understandable), his dad and I don’t care WHAT goes in fluid wise, as long as it goes in and stays in! Besides, these aren’t his permanent teeth yet…we can worry about healthy and enamel at a later stage, let’s just stay out of hospital for now! I was laughing with friend who also has a peg fed baby earlier on in the week saying we are so different from “normal” parents who worry about how healthy and the nutrition of the food that their child is eating first and foremost. A parent of a peg fed child doesn’t really care WHAT goes in as long as SOMETHING goes in! But funnily enough Tayden actually does eat very healthily (except for the Coke!) and doesnt like sweet things or chocolates at all - must be his father's genes coming through as mom just loves chocolates!
Saturday saw Tayden attend a friend’s 2nd birthday and my mom, being a mom and knowing me so well, warned me that Tayden probably wouldn’t be the least bit interested in eating or drinking or even socialising with the other children – just a friendly warning so that l wouldn’t be too discouraged on the day. I agreed 100% and said it was a good chance for him to socialise and interact with other kids and hey, if he ate anything then that would be awesome. If not, that would be fine too.
Well, Tayden totally blew us away! Rob and I stood and watched in amazement as he actually sat down at the little party table (first time ever!) and then starting gesticulating to us that he wanted to try snacks. I opened his little Barney bucket and he pulled out a packet of Niknaks that he has never had before, I opened it for him and he pulled one chip out and ate it. And then another. And another after that! And then before I knew it he was handing me other items to open for him to taste. Although he didn’t really eat them, items like smarties and novelty items such as chocolate toothpaste and chocolate strips, he was very willing to try it. And believe it or not, when the birthday boy got up to leave the table, our little man was STILL there and actually helped himself to the birthday boy’s chips. (sorry Josh but you gotta do what you gotta do!)
Rob and I couldn’t stop taking photographs (see below) of this amazing event and it was just great that after such a difficult week to be able to see the progress that he is making on a daily basis. It makes the challenging times worthwhile to see our child being the LAST one at the table, when all the other kids have left and he is still there, looking at sweets, tasting and trying and being interested in food and drink and what is happening around him. I always joke with Rob and say it was the best R180 000 we have ever spent going to Graz and watching Tayden, I reiterate that statement…it is nothing short of a miracle to watch our son eating and drinking like any other child and for that, apart from the amazing medical team in Graz, all glory goes to God!
I am learning on a daily basis that I have one very stubborn little guy and although he has learnt to eat and drink, he will still only do it on his terms, when and if he feels like it. For a parent, this is a really weird situation since we are meant to be "in control" but we are slowly starting to realise that we have now given Tayden the tools to be able to know when he wants to eat and we need to trust that if we have the food and liquid available, Tayden will eat when he is ready. As his mom, this is taking me a very long time to grasp this but watching him today I have realized this is the way our world is working at the moment.
Saturday afternoon was another first for us and just thinking about it bring a smile to my face. I cut up a watermelon and took it out into the garden and along with Rob and Humphrey and Maya our dogs, we sat and chilled listening to the rugby, enjoying the great weather and eating some ice cold watermelon. No pressure for Tayden, but there was if he wanted. And did he want! That little mouth couldn’t open fast enough to get the sweet fruit in…another big first for us and a healthy snack for our little man! He even asked for more and then promptly threw a temper tantrum when I told him it was finished! I still laugh over these temper tantrums over food – we never thought we would see the day that Tayden throws his toys over food!
With regards to food, favourites this week include top of the list his usual Jungle Oats, peas, carrots, jelly (NOT the orange one, heaven forbid and also keep the jelly separate from the custard, they are not to touch!) brown bread peanut butter sarmies and scrambled eggs – along with his watermelon of course! This morning I put out some bran muffin and butter for him which he wasnt too keen on but he discovered grapes today. I put 5 little grapes on his plate along with the muffin and he came through to the kitchen asking me for more. Not being sure what the more was for - the grapes or the muffin - l went through and all the little grapes were gone! A second 5 were given...and he asked for more again! Wow!
Tayden is making amazing progress in his OT skills and is now actually willing to get under things and his latest skill of which he is very proud is jumping on the spot. If I look at him and what other kids his age can do, he is still quite a bit behind but I refuse to focus on the negative and each day we can see his progress and how hard he is trying. His speech is slowly coming along although admittedly he does get very frustrated with mom as she doesnt always understand what he is saying or what he means. We are SO PROUD of our little guy, I cant believe that a year ago we didnt even know about the existence of the tube weaning programme and had a child who wouldnt even look at food.
Below find some pictures of him enjoying his friend Josh’s party – and all the food that came with it! Also below is an image showing I love a tubie - it is National Tube Awareness Week this week and I encourage you all to put this on your facebook status, in honour of Tayden, Jason, Imre, Patrick, Hannah, Christina and all the other tube fed children out there who need your support.
It is amazing how a couple of days can see such a turn around in our little man! Since last weekend, we have been struggling to get Tayden to drink, using every trick in the book to try and get liquids into him. His eating improved as the week went on but the drinking has been a challenge throughout the week, causing me to run out and buy hair colour to get rid of this grey!
Last night saw him deciding that Coke floats were cool and although his granny isn’t too keen on the Coke (which is totally understandable), his dad and I don’t care WHAT goes in fluid wise, as long as it goes in and stays in! Besides, these aren’t his permanent teeth yet…we can worry about healthy and enamel at a later stage, let’s just stay out of hospital for now! I was laughing with friend who also has a peg fed baby earlier on in the week saying we are so different from “normal” parents who worry about how healthy and the nutrition of the food that their child is eating first and foremost. A parent of a peg fed child doesn’t really care WHAT goes in as long as SOMETHING goes in! But funnily enough Tayden actually does eat very healthily (except for the Coke!) and doesnt like sweet things or chocolates at all - must be his father's genes coming through as mom just loves chocolates!
Saturday saw Tayden attend a friend’s 2nd birthday and my mom, being a mom and knowing me so well, warned me that Tayden probably wouldn’t be the least bit interested in eating or drinking or even socialising with the other children – just a friendly warning so that l wouldn’t be too discouraged on the day. I agreed 100% and said it was a good chance for him to socialise and interact with other kids and hey, if he ate anything then that would be awesome. If not, that would be fine too.
Well, Tayden totally blew us away! Rob and I stood and watched in amazement as he actually sat down at the little party table (first time ever!) and then starting gesticulating to us that he wanted to try snacks. I opened his little Barney bucket and he pulled out a packet of Niknaks that he has never had before, I opened it for him and he pulled one chip out and ate it. And then another. And another after that! And then before I knew it he was handing me other items to open for him to taste. Although he didn’t really eat them, items like smarties and novelty items such as chocolate toothpaste and chocolate strips, he was very willing to try it. And believe it or not, when the birthday boy got up to leave the table, our little man was STILL there and actually helped himself to the birthday boy’s chips. (sorry Josh but you gotta do what you gotta do!)
Rob and I couldn’t stop taking photographs (see below) of this amazing event and it was just great that after such a difficult week to be able to see the progress that he is making on a daily basis. It makes the challenging times worthwhile to see our child being the LAST one at the table, when all the other kids have left and he is still there, looking at sweets, tasting and trying and being interested in food and drink and what is happening around him. I always joke with Rob and say it was the best R180 000 we have ever spent going to Graz and watching Tayden, I reiterate that statement…it is nothing short of a miracle to watch our son eating and drinking like any other child and for that, apart from the amazing medical team in Graz, all glory goes to God!
I am learning on a daily basis that I have one very stubborn little guy and although he has learnt to eat and drink, he will still only do it on his terms, when and if he feels like it. For a parent, this is a really weird situation since we are meant to be "in control" but we are slowly starting to realise that we have now given Tayden the tools to be able to know when he wants to eat and we need to trust that if we have the food and liquid available, Tayden will eat when he is ready. As his mom, this is taking me a very long time to grasp this but watching him today I have realized this is the way our world is working at the moment.
Saturday afternoon was another first for us and just thinking about it bring a smile to my face. I cut up a watermelon and took it out into the garden and along with Rob and Humphrey and Maya our dogs, we sat and chilled listening to the rugby, enjoying the great weather and eating some ice cold watermelon. No pressure for Tayden, but there was if he wanted. And did he want! That little mouth couldn’t open fast enough to get the sweet fruit in…another big first for us and a healthy snack for our little man! He even asked for more and then promptly threw a temper tantrum when I told him it was finished! I still laugh over these temper tantrums over food – we never thought we would see the day that Tayden throws his toys over food!
With regards to food, favourites this week include top of the list his usual Jungle Oats, peas, carrots, jelly (NOT the orange one, heaven forbid and also keep the jelly separate from the custard, they are not to touch!) brown bread peanut butter sarmies and scrambled eggs – along with his watermelon of course! This morning I put out some bran muffin and butter for him which he wasnt too keen on but he discovered grapes today. I put 5 little grapes on his plate along with the muffin and he came through to the kitchen asking me for more. Not being sure what the more was for - the grapes or the muffin - l went through and all the little grapes were gone! A second 5 were given...and he asked for more again! Wow!
Tayden is making amazing progress in his OT skills and is now actually willing to get under things and his latest skill of which he is very proud is jumping on the spot. If I look at him and what other kids his age can do, he is still quite a bit behind but I refuse to focus on the negative and each day we can see his progress and how hard he is trying. His speech is slowly coming along although admittedly he does get very frustrated with mom as she doesnt always understand what he is saying or what he means. We are SO PROUD of our little guy, I cant believe that a year ago we didnt even know about the existence of the tube weaning programme and had a child who wouldnt even look at food.
Below find some pictures of him enjoying his friend Josh’s party – and all the food that came with it! Also below is an image showing I love a tubie - it is National Tube Awareness Week this week and I encourage you all to put this on your facebook status, in honour of Tayden, Jason, Imre, Patrick, Hannah, Christina and all the other tube fed children out there who need your support.