Current Weight: 11.5kg
Dearest Tayden
It is hard to believe that a year ago you were still being fed solely through your mickey, with no light at the end of the tunnel – except maybe a train coming to whack us head on! We didn’t even know about Graz or the exciting journey that lay ahead of us.
My darling, your life was so unpleasant back then with constant infections in your feeding peg, trips to Dr P, being admitted to St Georges and this whole story just carried on and on with what we thought was no end in sight. 26 admissions in less than a year, close to 4 ½ months in hospital. You were so traumatized, your dad, granny and me exhausted.
I can remember even calling granny early on her birthday to say well hope you have a great day…but can you come look after Tayden, he has been admitted! Your dad and I were desperate to stop the constant cycle of hospitalisations but nothing seemed to help. I remember the total despair that we I felt, the helplessness as nothing we did worked. We tried all the advice offered by a range of specialists from OT’s, dieticians, paeds, specialists – you name it and we consulted with them!
You refused to eat, you would start screaming if we brought food near you, we bought every bottle, sippi cup and drinking device known to man trying to get you to drink but you remained firm – there was no liquid or food (except a couple of spoons of cereal and some egg!) going into that mouth! To describe you as stubborn would be a major understatement! There was no hope, no doctor or expert we consulted with could give us any idea on why you wouldn’t eat. Nobody could tell us anything about the infections except that your body seemed to be rejecting the peg. You even underwent allergy tests to see whether you were allergic to the silicone that the mic key was made of!
You spent a total of 16 months with a mic key / peg, getting fed through that gastrotomy tube. Your dad and I used to get up every three hours to feed you, to ensure that you would get all the nutrients you needed. Other parents were lucky enough to make use of a machine to feed but we used it once and you managed to get it wound around your neck and we decided never again – we just couldn’t take the chance that our restless sleeper would get it wound around his neck again with tragic consequences. For 480 nights in a row we got up, feeding you an average of three feeds a night, bringing it to about 1440 times we fed you your special “gomma-gomma” juice as we used to call it – makes me realise why we were so exhausted the whole time! J
And just look at you now! If you had told us a year ago that I would be smiling as l am today, I would never have believed you. You are fully tube weaned and doing so well! It is now 5 ½ months since we returned from magical Graz and we still stand in awe when we see you put food into your mouth. Personally, l don’t think l will ever take your eating a single thing for granted, it is a sight that fills me with a warmth that nothing can compare to.
Your drinking still gives us cause for concern at times but as soon as you hit your daily 200ml, everybody relaxes and breathes a sigh of relief. Whether it is cold water (current favourite), ginger ale, non alcoholic beer, tea, juice or coke, we don’t mind what the liquid is as long as it goes down! (As I tell daddy, we can worry about false teeth we will need as a result of the coke at another time!)
Sometimes I forget how far you actually have come and at times get frustrated as you don’t seem to do things that other children do. But then I sit back and remember the times before Graz, before throwing the dreaded peg away, the dark times that we went through and l realise how far we have come!
You have been giving us quite a bit of concern with your drinking the past couple of weeks and it has taken us a while to realise the problem, but luckily we fixed it yesterday by getting rid of your all sippi cups and reverting back to bottles with teats. And how did you react – drank 260ml of liquid without batting an eye! No pressure angel, you drink out of those bottles until you are ready to move on. Remember you have only been drinking for just over 6 months now, so take it slow, everything at your pace.
You are eating up a storm! I hate that I have to work all day and miss out on all your little antics – like demanding food from granny (who ever though we would see the day!). Other children have Woolies, you have granny. With her famous fig jam with is your current favourite, you are wolfing down about 2 slices of bread a day with that on! Amazed? Yes, we are simply gobsmacked!
To watch you experience new flavours and tastes is so great. Your current favourites at the moment (apart from the fig jam!) include jungle oats, fishcakes, pumpkin fritters as well as veggies of all type and kinds. Step aside Woolies and step closer Granny Arleen!
You still don’t like sweet things and I think from now on I need to pack you your own party packs, with veggies and water! Who would have thought!
You still have some OT, speech and spatial issues but we are taking things really slowly with you, no pressure and no expectations – we are working on “Tayden time” and although we use the doctors and specialists as a guide, we now have realized as your parents we know you best and what you need and require. So we are shelving the therapies for a while, just letting you be a normal little 2 year old full of fun and laughter!
We are so lucky to experience this new phase of your life with you. Every step, every accomplishment we celebrate and share with you, we are just so proud of you! One day you will read this and see what you went through and see all the steps in your journey.
Never forget how much we love you and how far you have come.
All our love
mom & dad
Dearest Tayden
It is hard to believe that a year ago you were still being fed solely through your mickey, with no light at the end of the tunnel – except maybe a train coming to whack us head on! We didn’t even know about Graz or the exciting journey that lay ahead of us.
My darling, your life was so unpleasant back then with constant infections in your feeding peg, trips to Dr P, being admitted to St Georges and this whole story just carried on and on with what we thought was no end in sight. 26 admissions in less than a year, close to 4 ½ months in hospital. You were so traumatized, your dad, granny and me exhausted.
I can remember even calling granny early on her birthday to say well hope you have a great day…but can you come look after Tayden, he has been admitted! Your dad and I were desperate to stop the constant cycle of hospitalisations but nothing seemed to help. I remember the total despair that we I felt, the helplessness as nothing we did worked. We tried all the advice offered by a range of specialists from OT’s, dieticians, paeds, specialists – you name it and we consulted with them!
You refused to eat, you would start screaming if we brought food near you, we bought every bottle, sippi cup and drinking device known to man trying to get you to drink but you remained firm – there was no liquid or food (except a couple of spoons of cereal and some egg!) going into that mouth! To describe you as stubborn would be a major understatement! There was no hope, no doctor or expert we consulted with could give us any idea on why you wouldn’t eat. Nobody could tell us anything about the infections except that your body seemed to be rejecting the peg. You even underwent allergy tests to see whether you were allergic to the silicone that the mic key was made of!
You spent a total of 16 months with a mic key / peg, getting fed through that gastrotomy tube. Your dad and I used to get up every three hours to feed you, to ensure that you would get all the nutrients you needed. Other parents were lucky enough to make use of a machine to feed but we used it once and you managed to get it wound around your neck and we decided never again – we just couldn’t take the chance that our restless sleeper would get it wound around his neck again with tragic consequences. For 480 nights in a row we got up, feeding you an average of three feeds a night, bringing it to about 1440 times we fed you your special “gomma-gomma” juice as we used to call it – makes me realise why we were so exhausted the whole time! J
And just look at you now! If you had told us a year ago that I would be smiling as l am today, I would never have believed you. You are fully tube weaned and doing so well! It is now 5 ½ months since we returned from magical Graz and we still stand in awe when we see you put food into your mouth. Personally, l don’t think l will ever take your eating a single thing for granted, it is a sight that fills me with a warmth that nothing can compare to.
Your drinking still gives us cause for concern at times but as soon as you hit your daily 200ml, everybody relaxes and breathes a sigh of relief. Whether it is cold water (current favourite), ginger ale, non alcoholic beer, tea, juice or coke, we don’t mind what the liquid is as long as it goes down! (As I tell daddy, we can worry about false teeth we will need as a result of the coke at another time!)
Sometimes I forget how far you actually have come and at times get frustrated as you don’t seem to do things that other children do. But then I sit back and remember the times before Graz, before throwing the dreaded peg away, the dark times that we went through and l realise how far we have come!
You have been giving us quite a bit of concern with your drinking the past couple of weeks and it has taken us a while to realise the problem, but luckily we fixed it yesterday by getting rid of your all sippi cups and reverting back to bottles with teats. And how did you react – drank 260ml of liquid without batting an eye! No pressure angel, you drink out of those bottles until you are ready to move on. Remember you have only been drinking for just over 6 months now, so take it slow, everything at your pace.
You are eating up a storm! I hate that I have to work all day and miss out on all your little antics – like demanding food from granny (who ever though we would see the day!). Other children have Woolies, you have granny. With her famous fig jam with is your current favourite, you are wolfing down about 2 slices of bread a day with that on! Amazed? Yes, we are simply gobsmacked!
To watch you experience new flavours and tastes is so great. Your current favourites at the moment (apart from the fig jam!) include jungle oats, fishcakes, pumpkin fritters as well as veggies of all type and kinds. Step aside Woolies and step closer Granny Arleen!
You still don’t like sweet things and I think from now on I need to pack you your own party packs, with veggies and water! Who would have thought!
You still have some OT, speech and spatial issues but we are taking things really slowly with you, no pressure and no expectations – we are working on “Tayden time” and although we use the doctors and specialists as a guide, we now have realized as your parents we know you best and what you need and require. So we are shelving the therapies for a while, just letting you be a normal little 2 year old full of fun and laughter!
We are so lucky to experience this new phase of your life with you. Every step, every accomplishment we celebrate and share with you, we are just so proud of you! One day you will read this and see what you went through and see all the steps in your journey.
Never forget how much we love you and how far you have come.
All our love
mom & dad