Firstly my apologies for not updating more often, it has been quite hectic this side! I have not been well and Tayden has…well…let’s just say that he has been keeping us on our toes! He, for some unknown reason, has decided that he no longer is interested in drinking at all and eating is basically non-existent.
But our paed has told us not to worry and only weigh him every 3 months to see his progress instead of weekly as we were doing to start with. So, off we headed to our faithful paed on Friday to see how Tayden has progressed. He basically grew a whopping 1cm in height and is 100gm up, now 11.8kg. On average a little boy Tayden’s age should be around 13.3kg so we are falling behind there but thank goodness the weight to height ratio is okay – so he is not a fatty boom-boom!
We mentioned to Dr P that we are concerned about the lack of drinking that Tayden has undertaken lately, we are finding it really difficult to get any kind of liquids into him so are now even resorting to “cheating” and making really milky porridge or cereal, jelly, ice cream…you name it to try and get some liquid into this child of ours! My mom has even bought him a mini little cup and saucer set that he sits and drinks tea out of – too cute for words!
Dr P told us that 400ml is the usual cut off that they use for a child to gauge whether they are hydrated or not (apart from the obvious skin tests) but due to Tayden never been a huge drinker and the fact that l am sure he would be tired of having to admit us everyday we didn’t reach 400ml, our cut off is 200ml for Tayden in a 24 hour period.
You have NO IDEA how stressful it is, continuously just striving for that little amount which sounds so small, I mean it is less than one cup, but to try and get Tayden to ingest that…shu, it takes a minor miracle each day! I have been in tears too many times to mention and although people say a person should just relax and it will come (haha, you come and try!), it is not as easy as that! I have one very strong willed little guy here who is not keen to do what he doesn’t want to do…and at the moment that includes drinking!
It all came to a head on Sunday morning when we hadn’t had a wee nappy since the previous morning and the goal of 200ml of liquid faded like mist before the sun. I called the paed and we were admitted to St G although l must admit that we did try on our own the entire day to get to that magic number or at least get a wee nappy but no luck! We were admitted to the paed ward just after 4pm and a drip was inserted for Tayden. We spent the night being rehydrated and were sent on our way the next morning again. Feel kind of embarrassed that you are there to be rehydrated when there are other kids who are really sick, have broken bones etc but what can a person do – Tayden just would not drink a thing! But, in his defence, the paed did find a big mouth ulcer that seems to be the problem and the reason why he refuses to co-operate with mom and Dr P!
This week has been a constant battle of reaching that magic number, with me turning to granny to help most days when l hit a major stumbling block. Granny does seem to have the magic touch at times! I asked my mom if we were so stubborn as kids or not interested in drinking or eating and she had to admit that even my nephews who were a handful always liked their food and drink so this is quite an interesting scenario for her. Hmmm…..personally l would prefer smooth sailing, my nerves are shot with this hot weather and lack of fluid! What other mom offers her mom ice cream cones at 8am to try and get liquid in? Hehehe!
He has made a good little friend for himself in the form of Josh, the little boy of some church friends that we have become close with. Josh – or “Osh” as Tayden calls him – and Tay play well together and both have a real passion for a great purple dinosaur so that is great and they have great fun sorting through the many dvd’s and videos that we have. Josh is bigger than Tayden but they play together so well and Tayden is learning so much in this experience, from learning to share, to having some encouragement to eat and drink (yes mommy is sneaky!!!).
On the physical side, Tayden is developing extremely well! He can now climb up and down stairs by himself, he crawls around on his hands and knees and will crouch to crawl under the table etc. He is more vocal as well, pointing out “mom” and “dad” and “Tay” and the ever popular “Leo” on photographs and “Bar” is also vocalized often, whenever he wants Barney played! He is getting around faster as well and although he is very small of his age and built quite slightly, he is fast and not scared to try things, which is great!
As I said, food is not a favourite at the moment but at least we have gained 100gm in 3 months and not lost weight or stayed the same and favourites at the moment include granny’s pumpkin/butternut/vegetable fritters as well as mash. He likes Woolies ice cream as well so I am piling up the cones to try and get that liquid in!
It is also great for us to be in contact with the other tube fed children from around the world that we met in Graz and keep up with their progress! Hannah, Jason, Patrick, Christina and all the other little friends, we think of you so often and pray that all is well with you!
Until next time…Tayden is progressing well, just a bit slow in the eating and especially the drinking!
But our paed has told us not to worry and only weigh him every 3 months to see his progress instead of weekly as we were doing to start with. So, off we headed to our faithful paed on Friday to see how Tayden has progressed. He basically grew a whopping 1cm in height and is 100gm up, now 11.8kg. On average a little boy Tayden’s age should be around 13.3kg so we are falling behind there but thank goodness the weight to height ratio is okay – so he is not a fatty boom-boom!
We mentioned to Dr P that we are concerned about the lack of drinking that Tayden has undertaken lately, we are finding it really difficult to get any kind of liquids into him so are now even resorting to “cheating” and making really milky porridge or cereal, jelly, ice cream…you name it to try and get some liquid into this child of ours! My mom has even bought him a mini little cup and saucer set that he sits and drinks tea out of – too cute for words!
Dr P told us that 400ml is the usual cut off that they use for a child to gauge whether they are hydrated or not (apart from the obvious skin tests) but due to Tayden never been a huge drinker and the fact that l am sure he would be tired of having to admit us everyday we didn’t reach 400ml, our cut off is 200ml for Tayden in a 24 hour period.
You have NO IDEA how stressful it is, continuously just striving for that little amount which sounds so small, I mean it is less than one cup, but to try and get Tayden to ingest that…shu, it takes a minor miracle each day! I have been in tears too many times to mention and although people say a person should just relax and it will come (haha, you come and try!), it is not as easy as that! I have one very strong willed little guy here who is not keen to do what he doesn’t want to do…and at the moment that includes drinking!
It all came to a head on Sunday morning when we hadn’t had a wee nappy since the previous morning and the goal of 200ml of liquid faded like mist before the sun. I called the paed and we were admitted to St G although l must admit that we did try on our own the entire day to get to that magic number or at least get a wee nappy but no luck! We were admitted to the paed ward just after 4pm and a drip was inserted for Tayden. We spent the night being rehydrated and were sent on our way the next morning again. Feel kind of embarrassed that you are there to be rehydrated when there are other kids who are really sick, have broken bones etc but what can a person do – Tayden just would not drink a thing! But, in his defence, the paed did find a big mouth ulcer that seems to be the problem and the reason why he refuses to co-operate with mom and Dr P!
This week has been a constant battle of reaching that magic number, with me turning to granny to help most days when l hit a major stumbling block. Granny does seem to have the magic touch at times! I asked my mom if we were so stubborn as kids or not interested in drinking or eating and she had to admit that even my nephews who were a handful always liked their food and drink so this is quite an interesting scenario for her. Hmmm…..personally l would prefer smooth sailing, my nerves are shot with this hot weather and lack of fluid! What other mom offers her mom ice cream cones at 8am to try and get liquid in? Hehehe!
He has made a good little friend for himself in the form of Josh, the little boy of some church friends that we have become close with. Josh – or “Osh” as Tayden calls him – and Tay play well together and both have a real passion for a great purple dinosaur so that is great and they have great fun sorting through the many dvd’s and videos that we have. Josh is bigger than Tayden but they play together so well and Tayden is learning so much in this experience, from learning to share, to having some encouragement to eat and drink (yes mommy is sneaky!!!).
On the physical side, Tayden is developing extremely well! He can now climb up and down stairs by himself, he crawls around on his hands and knees and will crouch to crawl under the table etc. He is more vocal as well, pointing out “mom” and “dad” and “Tay” and the ever popular “Leo” on photographs and “Bar” is also vocalized often, whenever he wants Barney played! He is getting around faster as well and although he is very small of his age and built quite slightly, he is fast and not scared to try things, which is great!
As I said, food is not a favourite at the moment but at least we have gained 100gm in 3 months and not lost weight or stayed the same and favourites at the moment include granny’s pumpkin/butternut/vegetable fritters as well as mash. He likes Woolies ice cream as well so I am piling up the cones to try and get that liquid in!
It is also great for us to be in contact with the other tube fed children from around the world that we met in Graz and keep up with their progress! Hannah, Jason, Patrick, Christina and all the other little friends, we think of you so often and pray that all is well with you!
Until next time…Tayden is progressing well, just a bit slow in the eating and especially the drinking!