Weight: 13.5kg
Favourite Foods: Oatees, Pringles (yes, still!!!), McDonald’s chippies, meat (all of a sudden!), bread with syrup, apple and his usual vegetables of pumpkin, butternut, carrots and peas (FROZEN!!)
Drinks: Rooibos tea with a touch of sugar (ice
cold)
It has been quite a while since I have updated the website, my sincere apologies for that! Since the last update, Tayden has been hospitalized 3 times and had another set of grommets inserted, with him being hospitalized for amongst other things dysentery. But he continues to make progress, for which we are eternally grateful. The first positive news is that Tayden is in fact NOT deaf, but rather the opposite and has very sensitive hearing which is why he covers his ears at time and doesn’t like loud noises, loud people, children crying etc. That we can live with, and deal with, but praise God he is not deaf!
Secondly, we have had to restart all his therapies again. He was doing so well that the OT said we can stop with her and start with the Physio. This didn’t last long, before he had a “sensory meltdown” and totally lost it.
This was a huge setback for him and we had to restart OT and stop the physio and go ever-so-gently with the speech etc. But, it has been about a month now of back at OT and we are slowly overcoming the sensory issues and I even have Tayden asking when he is going to go see his “Aunty Emma” as he calls his OT. Tayden’s speech is also improving, I had to laugh when the speech therapist told me that for the first time ever, she actually understand what he is saying! So we can tick that block, progress has been made.
But the biggest progress of all has GOT to be
with regards to his school. It took a full 3 months, and lots of patience from his teacher Leanne and granny, for us to actually get him to stay at school on his own, for a whopping 30 minutes the first time! We are now up to leaving him there, on a Tuesday and Thursday morning, from 9-11.45am, which allows us to ensure he eats before school, as the eating – and specifically the drinking - is very low during the school days.
He loves his little friends there and will smile shyly and tell you that he plays with Jesse and Abigail at school, he loves the bikes and singing! So we are very pleased about this development, I for one wondered whether we would ever get it right because at one point he would freak out if he didn’t even see my mom. The other kids got quite used to having granny there, so my mom all of a sudden had an extra 9 grandchildren to love! He woke me up this morning and told me, “Tay go school!” and was so disappointed when I told him no baby, only
tomorrow. Then he tried, “Tay go Aunty Emma!” and I said no baby, only Friday. So he looked at me and then triumphantly told me, “Tay go Granny!” This child and his granny are inseparable, how lucky is he to have such a wonderful granny???
There are good days and bad days with Tayden and a while ago we were so impressed with him downing up to 400ml a day, that we thought we should keep a food diary showing exactly how much he eats and drinks daily. We got so excited, thinking of going to our paed and presenting it to him and having him
say no ways! Really? He drank that much??? Of course, within 3 days of starting the diary we hit days where we would go under 120ml, which was heart wrenching but made us realise that the idea of getting rid of the peg is still not going to be a reality for quite a while to come. I was quite down when I realized that this new peg has been in for a year already, it is kind of a knife that twists your heart as you realise that your child is STILL dependent on a little piece of plastic to keep him nourished. This is NOT how we planned things.
Good days see us laughing at how well he is doing, celebrating a 350ml+ day, bad days see us crying and stressing that the trust fund is almost empty, what happens when the last little bit is drained? There are so many bills to pay, therapies to cover and special formula and medical equipment to
purchase…what will we do when it runs dry altogether?
But today I see how our lives have been enriched by the peg. It is keeping our child alive, our beautiful, precious baby boy. I have had the opportunity to help people come to terms with having a tube fed child by speaking to them and showing them that life CAN go on with a peg. I have had the opportunity to meet some wonderful people, to learn about myself and to grow. I have met my best friend through all this, a lady who has taught me
never to give up, to always count my blessings and to never forget who is in charge – our saviour Jesus. She has been able to teach me patience and how to
deal with a peg fed child, since Jason is her darling little man.
But today, this blog is dedicated to Tay…to my gorgeous blue-eyed baby boy who never gives up, who always has a smile and is always ready to face
another day. My sunshine, mommy and daddy are here, for the long run and if the peg is meant to come out for a while yet, then so be it! Let’s just take a second to remember how far you have come, all you have been through and all you have achieved.
Mommy is very proud of you angel. Love you THIS MUCH! xxxxx
All in all a good period for Tay and although the weight isn’t up much, we have made a lot of progress and we are very happy and excited about
what is yet to come our way!
Thank you for reading….from a mom xxx
Favourite Foods: Oatees, Pringles (yes, still!!!), McDonald’s chippies, meat (all of a sudden!), bread with syrup, apple and his usual vegetables of pumpkin, butternut, carrots and peas (FROZEN!!)
Drinks: Rooibos tea with a touch of sugar (ice
cold)
It has been quite a while since I have updated the website, my sincere apologies for that! Since the last update, Tayden has been hospitalized 3 times and had another set of grommets inserted, with him being hospitalized for amongst other things dysentery. But he continues to make progress, for which we are eternally grateful. The first positive news is that Tayden is in fact NOT deaf, but rather the opposite and has very sensitive hearing which is why he covers his ears at time and doesn’t like loud noises, loud people, children crying etc. That we can live with, and deal with, but praise God he is not deaf!
Secondly, we have had to restart all his therapies again. He was doing so well that the OT said we can stop with her and start with the Physio. This didn’t last long, before he had a “sensory meltdown” and totally lost it.
This was a huge setback for him and we had to restart OT and stop the physio and go ever-so-gently with the speech etc. But, it has been about a month now of back at OT and we are slowly overcoming the sensory issues and I even have Tayden asking when he is going to go see his “Aunty Emma” as he calls his OT. Tayden’s speech is also improving, I had to laugh when the speech therapist told me that for the first time ever, she actually understand what he is saying! So we can tick that block, progress has been made.
But the biggest progress of all has GOT to be
with regards to his school. It took a full 3 months, and lots of patience from his teacher Leanne and granny, for us to actually get him to stay at school on his own, for a whopping 30 minutes the first time! We are now up to leaving him there, on a Tuesday and Thursday morning, from 9-11.45am, which allows us to ensure he eats before school, as the eating – and specifically the drinking - is very low during the school days.
He loves his little friends there and will smile shyly and tell you that he plays with Jesse and Abigail at school, he loves the bikes and singing! So we are very pleased about this development, I for one wondered whether we would ever get it right because at one point he would freak out if he didn’t even see my mom. The other kids got quite used to having granny there, so my mom all of a sudden had an extra 9 grandchildren to love! He woke me up this morning and told me, “Tay go school!” and was so disappointed when I told him no baby, only
tomorrow. Then he tried, “Tay go Aunty Emma!” and I said no baby, only Friday. So he looked at me and then triumphantly told me, “Tay go Granny!” This child and his granny are inseparable, how lucky is he to have such a wonderful granny???
There are good days and bad days with Tayden and a while ago we were so impressed with him downing up to 400ml a day, that we thought we should keep a food diary showing exactly how much he eats and drinks daily. We got so excited, thinking of going to our paed and presenting it to him and having him
say no ways! Really? He drank that much??? Of course, within 3 days of starting the diary we hit days where we would go under 120ml, which was heart wrenching but made us realise that the idea of getting rid of the peg is still not going to be a reality for quite a while to come. I was quite down when I realized that this new peg has been in for a year already, it is kind of a knife that twists your heart as you realise that your child is STILL dependent on a little piece of plastic to keep him nourished. This is NOT how we planned things.
Good days see us laughing at how well he is doing, celebrating a 350ml+ day, bad days see us crying and stressing that the trust fund is almost empty, what happens when the last little bit is drained? There are so many bills to pay, therapies to cover and special formula and medical equipment to
purchase…what will we do when it runs dry altogether?
But today I see how our lives have been enriched by the peg. It is keeping our child alive, our beautiful, precious baby boy. I have had the opportunity to help people come to terms with having a tube fed child by speaking to them and showing them that life CAN go on with a peg. I have had the opportunity to meet some wonderful people, to learn about myself and to grow. I have met my best friend through all this, a lady who has taught me
never to give up, to always count my blessings and to never forget who is in charge – our saviour Jesus. She has been able to teach me patience and how to
deal with a peg fed child, since Jason is her darling little man.
But today, this blog is dedicated to Tay…to my gorgeous blue-eyed baby boy who never gives up, who always has a smile and is always ready to face
another day. My sunshine, mommy and daddy are here, for the long run and if the peg is meant to come out for a while yet, then so be it! Let’s just take a second to remember how far you have come, all you have been through and all you have achieved.
Mommy is very proud of you angel. Love you THIS MUCH! xxxxx
All in all a good period for Tay and although the weight isn’t up much, we have made a lot of progress and we are very happy and excited about
what is yet to come our way!
Thank you for reading….from a mom xxx