Tayden is having an absolute ball at the moment. He is home with mom and dad for the holidays, granny (aka “the crèche”) is closed and taking a well deserved break! The only problem is that the PE weather hasn’t been playing along and has seen very bad weather over the week or so. So beach activities have been out, indoor puzzles, books and cars and games have been the order of the day!
We spent our first Christmas with Tayden out of hospital and it was really, really great! We had Christmas at our house this year, with my sister and her family and my mom coming over. It was the first Christmas that Tayden actually took an active part in proceedings and definitely the first Christmas that he ate! We all sat around the table smiling and looking on in amazement as roast potatoes disappeared as well as his favourite butternut and peas. The meat is still a bit of a problem but we cut it very fine and manage to get a little bit in per meal. But, as you can imagine, we are not in the least bit worried about WHAT goes in, as long as the food does go in!
Drinking can be slow some days but like moms everywhere l am learning the art of “cheating” to get liquids in, including a favourite for Tayden at the moment which is custard. I water down the custard with full cream milk and pop it into a bottle for him. He loves this drink at the moment, as well as rooibos tea with milk and sugar. Water is still a battle but it is very early days still and he is doing so well!
Everyday sees Tayden progressing more and trying to say more words. New words this week include “door”, “arm” (farm) and “moon”. He has also learnt the different shapes of square, star, triangle and circle and although he cant say them, he will point out the different shapes to whoever asks him to - yes, proud mom boasting here!!!
Barney is still the order of the day (groan!) but it is amazing to watch him interact and do the actions to songs, march as they do or dance away as happy as a lark. This is what we have wanted, a little man who is happy, healthy and eating!
Tayden is still very into his books and loves sitting and paging through them with anyone who is willing to. Favourites at the moment include Thomas the Tank Engine (but to dad’s disappointment only one particular one that he has to read over and over and over…), the 101 Dalmatians and then a story book of his favourite movie, The Jungle Book.
We are having some friends over and play dates to encourage him to socialize and it is going very well. Robert’s cousin, his wife and their two boys came to visit a couple of days ago and the three boys had such fun together! From the sandpit to cars to climbing the jungle gym (okay, okay, Tayden stood and watched that one!), they had a ball! Tayden is very happy to play with one or two children, but gets stressed out with too many kids or too much noise, just as any other child his age.
Tayden has been complaining about his feet being sore for over two weeks now. Mom, dad, aunty Raleen and granny have all looked but couldn’t find anything wrong. No swelling, redness etc. Yet the “owwww’ing” continued on Tayden’s part. So, that, in addition to a peg wound that just hasn’t healed as well as we would have liked to and is still oozing and looking very red and angry some days, we headed back to our faithful paed, Dr P.
Luckily, the feet were sorted out quickly with us being told that he had a number of deep thorns in his feet that were the cause of the pain. Nothing we can do about that, they just have to work their way out. Felt like a bit of an idiot l must admit until Dr P said they were really difficult to spot as they were so deep (thanks Dr P!). He was glad that we did keep Tayden barefoot though and told us to continue to – good for his tactile issues to walk barefoot on different surfaces etc. Tayden has progressed to walking without any complaints on bricks and paving, the grass still gets a face grimace to start with and a little walk on his toes for a couple of metres but it is definitely an improvement. The one thing he does however refuse to walk on, is wet grass. Yesterday he stood deadstill and held out his arms to me, refused to move from where he was about 3m into the lawn! He looked so funny stranded there on the lawn I couldn’t help but laugh!
The peg wound, however, is still giving us issues and bothering Tayden. We have given it over 8wk to heal but it is still not right or closing properly unfortunately. Tayden will touch it and moan to us that it is sore so we decided to have it checked out, rather safe than sorry when it comes to our little man! Dr P has told us the wound is definitely not right and we need to consult with a surgeon and Tayden will be taken into theatre, the wound cleaned and scar tissue taken away and then neatly stitched. I didn’t know whether to laugh or cry when l heard our precious boy has to go into theatre again. Both Rob and l were very upset when we heard this diagnosis but we know Tayden is tough and will get through this obstacle with flying colours, as usual. Rob keeps saying that his peg wound scar is going to be a “chick magnet” when he is older, so now that it is going to be smaller and neatly stitched, l am not sure how it is going to affect his “chick status” – LOL!
We will contact the same surgeon who reinserted Tayden’s peg when it came out earlier this year and hopefully we will be able to do this surgery before I come back to work on 10th January.
A good thing about the visit to the paed as well, was that l met by pure chance another mom whose little girl had a peg fitted about 3wk ago. This mom is having a really hard time and it is great to be able to be in a position to give her practical advice. As l told her, l am not a doctor, but have been through what she is going through at the moment and if l could help her in this process of adjustment, l would be most happy to oblige. It is a BIG upheaval of your entire life when your child has a peg fitted and nobody mentions how difficult it is or how isolated you feel. The doctors fit the peg and then it is almost a case of good luck and you are on your own – a terrifying prospect. The day to day care, the every 3-4 hour feedings through the night, the uncertainties, the infections, the future with a peg….all very scary prospects to have to deal with! If Rob and l can assist another family with advice and support, we would consider it an honour to be part of that child’s journey.
All in all, a great couple of weeks for Tayden and we are so proud of the progress he is making! Whoever would have thought that one trip to a little town in Austria could change our lives so dramatically, from being so dependent on a feeding peg to an independent child who, as l am writing this, is standing at my left elbow demanding more savoury biscuits! Until next time…God bless and thank you for sharing the miracle of Tayden’s journey with us!
We spent our first Christmas with Tayden out of hospital and it was really, really great! We had Christmas at our house this year, with my sister and her family and my mom coming over. It was the first Christmas that Tayden actually took an active part in proceedings and definitely the first Christmas that he ate! We all sat around the table smiling and looking on in amazement as roast potatoes disappeared as well as his favourite butternut and peas. The meat is still a bit of a problem but we cut it very fine and manage to get a little bit in per meal. But, as you can imagine, we are not in the least bit worried about WHAT goes in, as long as the food does go in!
Drinking can be slow some days but like moms everywhere l am learning the art of “cheating” to get liquids in, including a favourite for Tayden at the moment which is custard. I water down the custard with full cream milk and pop it into a bottle for him. He loves this drink at the moment, as well as rooibos tea with milk and sugar. Water is still a battle but it is very early days still and he is doing so well!
Everyday sees Tayden progressing more and trying to say more words. New words this week include “door”, “arm” (farm) and “moon”. He has also learnt the different shapes of square, star, triangle and circle and although he cant say them, he will point out the different shapes to whoever asks him to - yes, proud mom boasting here!!!
Barney is still the order of the day (groan!) but it is amazing to watch him interact and do the actions to songs, march as they do or dance away as happy as a lark. This is what we have wanted, a little man who is happy, healthy and eating!
Tayden is still very into his books and loves sitting and paging through them with anyone who is willing to. Favourites at the moment include Thomas the Tank Engine (but to dad’s disappointment only one particular one that he has to read over and over and over…), the 101 Dalmatians and then a story book of his favourite movie, The Jungle Book.
We are having some friends over and play dates to encourage him to socialize and it is going very well. Robert’s cousin, his wife and their two boys came to visit a couple of days ago and the three boys had such fun together! From the sandpit to cars to climbing the jungle gym (okay, okay, Tayden stood and watched that one!), they had a ball! Tayden is very happy to play with one or two children, but gets stressed out with too many kids or too much noise, just as any other child his age.
Tayden has been complaining about his feet being sore for over two weeks now. Mom, dad, aunty Raleen and granny have all looked but couldn’t find anything wrong. No swelling, redness etc. Yet the “owwww’ing” continued on Tayden’s part. So, that, in addition to a peg wound that just hasn’t healed as well as we would have liked to and is still oozing and looking very red and angry some days, we headed back to our faithful paed, Dr P.
Luckily, the feet were sorted out quickly with us being told that he had a number of deep thorns in his feet that were the cause of the pain. Nothing we can do about that, they just have to work their way out. Felt like a bit of an idiot l must admit until Dr P said they were really difficult to spot as they were so deep (thanks Dr P!). He was glad that we did keep Tayden barefoot though and told us to continue to – good for his tactile issues to walk barefoot on different surfaces etc. Tayden has progressed to walking without any complaints on bricks and paving, the grass still gets a face grimace to start with and a little walk on his toes for a couple of metres but it is definitely an improvement. The one thing he does however refuse to walk on, is wet grass. Yesterday he stood deadstill and held out his arms to me, refused to move from where he was about 3m into the lawn! He looked so funny stranded there on the lawn I couldn’t help but laugh!
The peg wound, however, is still giving us issues and bothering Tayden. We have given it over 8wk to heal but it is still not right or closing properly unfortunately. Tayden will touch it and moan to us that it is sore so we decided to have it checked out, rather safe than sorry when it comes to our little man! Dr P has told us the wound is definitely not right and we need to consult with a surgeon and Tayden will be taken into theatre, the wound cleaned and scar tissue taken away and then neatly stitched. I didn’t know whether to laugh or cry when l heard our precious boy has to go into theatre again. Both Rob and l were very upset when we heard this diagnosis but we know Tayden is tough and will get through this obstacle with flying colours, as usual. Rob keeps saying that his peg wound scar is going to be a “chick magnet” when he is older, so now that it is going to be smaller and neatly stitched, l am not sure how it is going to affect his “chick status” – LOL!
We will contact the same surgeon who reinserted Tayden’s peg when it came out earlier this year and hopefully we will be able to do this surgery before I come back to work on 10th January.
A good thing about the visit to the paed as well, was that l met by pure chance another mom whose little girl had a peg fitted about 3wk ago. This mom is having a really hard time and it is great to be able to be in a position to give her practical advice. As l told her, l am not a doctor, but have been through what she is going through at the moment and if l could help her in this process of adjustment, l would be most happy to oblige. It is a BIG upheaval of your entire life when your child has a peg fitted and nobody mentions how difficult it is or how isolated you feel. The doctors fit the peg and then it is almost a case of good luck and you are on your own – a terrifying prospect. The day to day care, the every 3-4 hour feedings through the night, the uncertainties, the infections, the future with a peg….all very scary prospects to have to deal with! If Rob and l can assist another family with advice and support, we would consider it an honour to be part of that child’s journey.
All in all, a great couple of weeks for Tayden and we are so proud of the progress he is making! Whoever would have thought that one trip to a little town in Austria could change our lives so dramatically, from being so dependent on a feeding peg to an independent child who, as l am writing this, is standing at my left elbow demanding more savoury biscuits! Until next time…God bless and thank you for sharing the miracle of Tayden’s journey with us!