Well I think this will probably be the last update for 2011. I am not on of those mom’s who are technologically advanced, in fact I rather fall into the challenged department!
All in all Tayden is doing well although has for the past couple of days not been eating or drinking well and we have all been quite concerned. It is just so funny as last Friday he was the Belle of the Ball at the paediatrician and today and the couple of days preceding it, he has been having a real struggle especially with the drinking. He literally changes from hour to hour. He started off feeling okay I reckon and when I turned around again the other day, he was white as a sheet and stayed that way the whole day. People probably think we are the most paranoid parents on the face of the earth but we KNOW Tayden and we know that when he isn’t feeling well, he will NOT eat or drink so we need to keep him healthy at all costs. We have managed very well to date, but somehow the fluid intake is dwindling.
Yesterday Tayden drank a whopping (please note the sarcasm) 30ml by 6.30pm last night. To say that I was at my wit’s end is an understatement as I had offered, presented, just put down, drunk myself in the hope he would want etc and nothing had worked! Note to people who say just put them in the bath and they will drink! – what HOGWASH! Please come to my house and try it…
I went to visit my mom in hospital last night and gave Rob strict instructions – GET FLUIDS INTO HIM! Start with black tea, if that doesn’t work, try ice cold water, if that doesn’t work, try custard, if that doesn’t work, try yoghurt, if that doesn’t work, try green jelly. If he still isn’t interested, there are ice lollies in the fridge….and if that doesn’t work, then pop it through the tube. Desperate times call for desperate measures as they say!!!!
You see, we are still desperately trying to get him to drink on his own. It sounds so simple, so normal, so easy to do but HOW do you get someone to drink who literally doesn’t seem to get thirsty? Well when I arrived home last night AT LAST it seems that he got a bit thirsty and drank 100ml on his own. But he cannot survive on less than 150ml for a 24 hour period…just not healthy! So we popped more fluids through the tube and hope that today will be a better day!
Yesterday was also the day of his OT / speech assessment results. The sad thing is that I thought he was doing so well – guess as a mom I am biased but must admit that today I am feeling a bit down after rereading them again. Tayden has definite and bad sensory issues which explains a lot about his behavior and how he deals with situations. He just gets totally overwhelmed with too many people, too much noise, unfamiliar situations etc. And although people may feel that he is simply being naughty, that is not the case at all! He is also lagging in gross motor skills, his fine motor skills need some work as well and it looks as if he is in for a tough year next year as we need to address these issues for him to order to assist him. The way forward includes OT once a week, speech once a week, daily “brushing” and some serious playtime to include jumping, crawling, swinging etc. He will need a bit of physio as well but we need to get the OT and sensory issues sorted before we can start on physio.
We were looking at trying to enroll Tayden at a small playschool for mornings only simply to allow him to interact more with other children but have been told to hold off on this for about 6 months, to allow the OT to work on sensory issues which will allow him to be able to integrate better with other children and not be so stressed or uncomfortable in situations. So that is the plan.
More playdates and interaction with other kids is also needed…so anyone who wants to come and play let me know – I make a mean chocolate cake for play date mommies! J LOL…
I stood and looked at Tayden this morning and thought how unfair things are, that he is working so hard to catch up with other kids but no matter what he does, it is never enough for him to catch up. He has been thrown such curveballs and been through so much in his short life and now has these major obstacles facing him again. As a mom it just breaks my heart that he is once again in a situation where he is once again behind – and through no fault of his own. My heart breaks for him and what can I do but provide him with the tools that he needs to be able to get these challenges under control or “fix” them.
But, for now we will concentrate on having a great break with Tayden, let him chill and have a nice time just playing outside in the nice weather, doing brushing (and more brushing every 2 hours!), playing games where we can incorporate OT movements in a fun way, like crawling competitions down the passage with dad etc.
We look forward to spending Christmas this year without a visit to “Hotel St Georges Hospital” and really spoiling our little man with time, love and all the attention that any child deserves.
From our family to ours….all the best for your Christmas and 2012. Thanks again for reading our update….
PS. Please keep Jason in your thoughts and prayers as his parents Bruce and Jill get ready to attempt a netcoaching tube wean with him. Read more about his journey on www.jasonsjourney.weebly.com. Go J go! We are rooting for you all the way my precious angel! Big hugs to you!!!!
All in all Tayden is doing well although has for the past couple of days not been eating or drinking well and we have all been quite concerned. It is just so funny as last Friday he was the Belle of the Ball at the paediatrician and today and the couple of days preceding it, he has been having a real struggle especially with the drinking. He literally changes from hour to hour. He started off feeling okay I reckon and when I turned around again the other day, he was white as a sheet and stayed that way the whole day. People probably think we are the most paranoid parents on the face of the earth but we KNOW Tayden and we know that when he isn’t feeling well, he will NOT eat or drink so we need to keep him healthy at all costs. We have managed very well to date, but somehow the fluid intake is dwindling.
Yesterday Tayden drank a whopping (please note the sarcasm) 30ml by 6.30pm last night. To say that I was at my wit’s end is an understatement as I had offered, presented, just put down, drunk myself in the hope he would want etc and nothing had worked! Note to people who say just put them in the bath and they will drink! – what HOGWASH! Please come to my house and try it…
I went to visit my mom in hospital last night and gave Rob strict instructions – GET FLUIDS INTO HIM! Start with black tea, if that doesn’t work, try ice cold water, if that doesn’t work, try custard, if that doesn’t work, try yoghurt, if that doesn’t work, try green jelly. If he still isn’t interested, there are ice lollies in the fridge….and if that doesn’t work, then pop it through the tube. Desperate times call for desperate measures as they say!!!!
You see, we are still desperately trying to get him to drink on his own. It sounds so simple, so normal, so easy to do but HOW do you get someone to drink who literally doesn’t seem to get thirsty? Well when I arrived home last night AT LAST it seems that he got a bit thirsty and drank 100ml on his own. But he cannot survive on less than 150ml for a 24 hour period…just not healthy! So we popped more fluids through the tube and hope that today will be a better day!
Yesterday was also the day of his OT / speech assessment results. The sad thing is that I thought he was doing so well – guess as a mom I am biased but must admit that today I am feeling a bit down after rereading them again. Tayden has definite and bad sensory issues which explains a lot about his behavior and how he deals with situations. He just gets totally overwhelmed with too many people, too much noise, unfamiliar situations etc. And although people may feel that he is simply being naughty, that is not the case at all! He is also lagging in gross motor skills, his fine motor skills need some work as well and it looks as if he is in for a tough year next year as we need to address these issues for him to order to assist him. The way forward includes OT once a week, speech once a week, daily “brushing” and some serious playtime to include jumping, crawling, swinging etc. He will need a bit of physio as well but we need to get the OT and sensory issues sorted before we can start on physio.
We were looking at trying to enroll Tayden at a small playschool for mornings only simply to allow him to interact more with other children but have been told to hold off on this for about 6 months, to allow the OT to work on sensory issues which will allow him to be able to integrate better with other children and not be so stressed or uncomfortable in situations. So that is the plan.
More playdates and interaction with other kids is also needed…so anyone who wants to come and play let me know – I make a mean chocolate cake for play date mommies! J LOL…
I stood and looked at Tayden this morning and thought how unfair things are, that he is working so hard to catch up with other kids but no matter what he does, it is never enough for him to catch up. He has been thrown such curveballs and been through so much in his short life and now has these major obstacles facing him again. As a mom it just breaks my heart that he is once again in a situation where he is once again behind – and through no fault of his own. My heart breaks for him and what can I do but provide him with the tools that he needs to be able to get these challenges under control or “fix” them.
But, for now we will concentrate on having a great break with Tayden, let him chill and have a nice time just playing outside in the nice weather, doing brushing (and more brushing every 2 hours!), playing games where we can incorporate OT movements in a fun way, like crawling competitions down the passage with dad etc.
We look forward to spending Christmas this year without a visit to “Hotel St Georges Hospital” and really spoiling our little man with time, love and all the attention that any child deserves.
From our family to ours….all the best for your Christmas and 2012. Thanks again for reading our update….
PS. Please keep Jason in your thoughts and prayers as his parents Bruce and Jill get ready to attempt a netcoaching tube wean with him. Read more about his journey on www.jasonsjourney.weebly.com. Go J go! We are rooting for you all the way my precious angel! Big hugs to you!!!!