As I sit and type this, I sit and think about what a hard time our little man has had and how he had bravely borne everything that has been sent his way. This post is a tribute to my little guy’s strength and his unfailing trust in Rob and me to keep him safe through all he has had to endure. At times l feel as if we let him down when we have to take him back to the hospital and the look he gives me when I carry him to theatre just breaks my heart…but we need to do what we do to keep him alive and well. I just hope one day he can understand all that. L My angel, you are truly an angel and mom and dad love you very, very much.
This past week saw us having a check up with our paediatrician to see how Tayden has been doing since the insertion of the peg about 11 weeks ago. We were very pleased to see that he had gained 500gm in weight and 1.5cm in height and although still in the bottom 5th centile for height and the bottom 5-10th centile in weight, he IS making progress and for that we are very glad! He is now 87.5cm tall and weighed in on Thursday at 12.95kg. We were so chuffed! This, after 8 months of no peg and no growth just warmed our hearts!
That was Thursday. Tonight (Sunday), Tayden weighed in at 12.5kg, having dropped almost 500gm in 3 days. It was heartbreaking to see that weight, all the effort of the last 11 weeks is out the door! Even though we have increased his fluid intake from roughly 500ml to 750ml a day, his weight has still dropped and to be honest, Rob and I are not happy about it at all. He goes through days of eating and drinking well and then all of a sudden, like this past weekend, he just isn’t interested in food at all. He drank less than 50ml on Saturday and today wasn’t much better. And that is why we have the peg – people always say to us, but he is eating and drinking so well, why does he need a peg? And this is why, because he just shuts down and you can stand on your head and he wont eat or drink a thing. Then, without stressing, we are able to “top him up” and give him the nutrients and fluids he needs and ensure he doesn’t get admitted for dehydration.
I was amazed to hear that a child Tayden’s age is meant to drink between 1.2-1.5l per day!!!! Seriously!!!! Wow, and we were so proud of his roughly 300ml a day his was drinking on his own! LOL – just shows that we still have a good way to go, although we are making progress each day and we never forget that! I commented to our paed as well that Tay isn’t interested in any type of sippi cup or cup and I had to laugh when he told me that Tayden is the only child that he would feel happy with still drinking out of a bottle at the age of 5 years old! As he said, as long as Tayden drinks, that is the main thing!
Favourites at the moment for Tayden include chicken on the braai, chipniks and bread with peanut butter. Drinking – rooibos tea with milk. Oh, and his absolute favourite is to come and beg some sugar while you are making tea or coffee…and must admit l give in each time! J
We are growing concerned about Tayden’s lack of talking but have decided to give him until January to catch up and if there is no remarkable progress by then, he will start speech therapy. One thing at a time, as our doctor keeps telling us. I noticed over the past weekend when Tayden was in a toddler’s group how far behind he is getting in his speech and interaction and to be honest, it is beginning to scare me. But, we will tackle it head on in January if there isn’t major progress by then and in the meanwhile keep talking to him and singing to him in the hope that he will start speaking more.
Tonight I feel as if we have lost all the progress we have made in the last 11 weeks with this sudden 500gm weight loss. He isn’t ill and there is no reason why he shouldn’t be eating, so WHAT is up now? Guess we will have to wait and see, and hope that tomorrow is better day for him!
Tayden’s dairy allergy is also playing up, as I mentioned in the last update. We were advised to change to sterimilk but our paed warned us that Tayden might not take to it, as it has a different taste – one thing you cannot cheat Tayden with, is to change something, his tastebuds are super sensitive! And that is exactly the case…he just takes one sip and hands it back to me saying, “no-no!” Very cute but quite frustrating when you need him to drink! So we are now boiling milk for him and allowing it to cool. The boiling of the milk breaks down the protein in the cow’s milk which then allows him to be able to drink ti without a majorly adverse reaction.
Tayden is such a happy little guy – we took him on a picnic today and he had a ball! In between redistributing half of the sand in the Seaview area to watching the monkeys and little buck at our picnic spot, he had such fun just running around being a little boy with not a care in the world. It was fantastic for us to see him laughing and playing, just chilling and not thinking about hospitals and operations. Although Tayden will have to go and have his g-tube changed to a mic-key soon, today was a time where we could chill with friends and forget about feeding tubes, hospitals and infections – and it was great…
For the first time in almost 3 years, we are going away for a weekend and cannot wait! Good friends from JNB are coming down to see us and Tayden and we are going to J’Bay for the weekend, cant wait! Must admit I am watching Tayden and the peg very closely, to ensure nothing goes wrong and we can have a much need
This past week saw us having a check up with our paediatrician to see how Tayden has been doing since the insertion of the peg about 11 weeks ago. We were very pleased to see that he had gained 500gm in weight and 1.5cm in height and although still in the bottom 5th centile for height and the bottom 5-10th centile in weight, he IS making progress and for that we are very glad! He is now 87.5cm tall and weighed in on Thursday at 12.95kg. We were so chuffed! This, after 8 months of no peg and no growth just warmed our hearts!
That was Thursday. Tonight (Sunday), Tayden weighed in at 12.5kg, having dropped almost 500gm in 3 days. It was heartbreaking to see that weight, all the effort of the last 11 weeks is out the door! Even though we have increased his fluid intake from roughly 500ml to 750ml a day, his weight has still dropped and to be honest, Rob and I are not happy about it at all. He goes through days of eating and drinking well and then all of a sudden, like this past weekend, he just isn’t interested in food at all. He drank less than 50ml on Saturday and today wasn’t much better. And that is why we have the peg – people always say to us, but he is eating and drinking so well, why does he need a peg? And this is why, because he just shuts down and you can stand on your head and he wont eat or drink a thing. Then, without stressing, we are able to “top him up” and give him the nutrients and fluids he needs and ensure he doesn’t get admitted for dehydration.
I was amazed to hear that a child Tayden’s age is meant to drink between 1.2-1.5l per day!!!! Seriously!!!! Wow, and we were so proud of his roughly 300ml a day his was drinking on his own! LOL – just shows that we still have a good way to go, although we are making progress each day and we never forget that! I commented to our paed as well that Tay isn’t interested in any type of sippi cup or cup and I had to laugh when he told me that Tayden is the only child that he would feel happy with still drinking out of a bottle at the age of 5 years old! As he said, as long as Tayden drinks, that is the main thing!
Favourites at the moment for Tayden include chicken on the braai, chipniks and bread with peanut butter. Drinking – rooibos tea with milk. Oh, and his absolute favourite is to come and beg some sugar while you are making tea or coffee…and must admit l give in each time! J
We are growing concerned about Tayden’s lack of talking but have decided to give him until January to catch up and if there is no remarkable progress by then, he will start speech therapy. One thing at a time, as our doctor keeps telling us. I noticed over the past weekend when Tayden was in a toddler’s group how far behind he is getting in his speech and interaction and to be honest, it is beginning to scare me. But, we will tackle it head on in January if there isn’t major progress by then and in the meanwhile keep talking to him and singing to him in the hope that he will start speaking more.
Tonight I feel as if we have lost all the progress we have made in the last 11 weeks with this sudden 500gm weight loss. He isn’t ill and there is no reason why he shouldn’t be eating, so WHAT is up now? Guess we will have to wait and see, and hope that tomorrow is better day for him!
Tayden’s dairy allergy is also playing up, as I mentioned in the last update. We were advised to change to sterimilk but our paed warned us that Tayden might not take to it, as it has a different taste – one thing you cannot cheat Tayden with, is to change something, his tastebuds are super sensitive! And that is exactly the case…he just takes one sip and hands it back to me saying, “no-no!” Very cute but quite frustrating when you need him to drink! So we are now boiling milk for him and allowing it to cool. The boiling of the milk breaks down the protein in the cow’s milk which then allows him to be able to drink ti without a majorly adverse reaction.
Tayden is such a happy little guy – we took him on a picnic today and he had a ball! In between redistributing half of the sand in the Seaview area to watching the monkeys and little buck at our picnic spot, he had such fun just running around being a little boy with not a care in the world. It was fantastic for us to see him laughing and playing, just chilling and not thinking about hospitals and operations. Although Tayden will have to go and have his g-tube changed to a mic-key soon, today was a time where we could chill with friends and forget about feeding tubes, hospitals and infections – and it was great…
For the first time in almost 3 years, we are going away for a weekend and cannot wait! Good friends from JNB are coming down to see us and Tayden and we are going to J’Bay for the weekend, cant wait! Must admit I am watching Tayden and the peg very closely, to ensure nothing goes wrong and we can have a much need