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- Learning to Eat (week14to18)
- Learning to Eat (week19to26)
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DAY 15: Friday 4 December 2009
Today I really tried alot of different food, but still spat most of it out. I even insisted on trying chilli flavoured crisps and quite liked them. When I was in the doctors waiting room, there was a baby eating some cheddar bites. i helped myself and they tasted quite nice. I did gag once but I put the hole thing in my mouth without biting it and then panicked. But my mom quickly held me upside down and it popped out.
Mom's comment: Camden was great today - lots of different foods went into her mouth - all self motivated. She even sat and had 'dinner' with Berlynn and insisted I feed her with a spoon. She took the food off the spoon beautifully (Jenny, her speech therapist would be so proud) and she never gagged once. She also seemed to be enjoying the taste of the food. I am sure she swallowed tiny amounts. Afterwards, my kitchen looked like a food bomb had exploded. But it was lovely to see. She is looking very thin and has lost about 860 grams so far. So am getting a little freaked out.
DAY 16: Saturday 5 December 2009
Today I drank a bit of tea with milk and sugar! I also had some butternut and sweet potato soup - infact I dunked my face in it and got quite a fright. But it was yummy. We went to a party and I got my face painted like a butterfly and then I jumped and jumped on the fairy jumping castle. For dinner I tried Jada's pureed chicken and vegetables and I even suprised myself. I did pretty well!
Mom's comment: Camden did brilliantly today. It was the best I have seen her 'eat'. She is trying so hard and it's all self-motivated which is great. Her poo has also changed colour for the first time ever. This must mean something is going down. As mom and dad always ask her: "Who's the champion of the world?" Without a doubt "Camden!"
Today I really tried alot of different food, but still spat most of it out. I even insisted on trying chilli flavoured crisps and quite liked them. When I was in the doctors waiting room, there was a baby eating some cheddar bites. i helped myself and they tasted quite nice. I did gag once but I put the hole thing in my mouth without biting it and then panicked. But my mom quickly held me upside down and it popped out.
Mom's comment: Camden was great today - lots of different foods went into her mouth - all self motivated. She even sat and had 'dinner' with Berlynn and insisted I feed her with a spoon. She took the food off the spoon beautifully (Jenny, her speech therapist would be so proud) and she never gagged once. She also seemed to be enjoying the taste of the food. I am sure she swallowed tiny amounts. Afterwards, my kitchen looked like a food bomb had exploded. But it was lovely to see. She is looking very thin and has lost about 860 grams so far. So am getting a little freaked out.
DAY 16: Saturday 5 December 2009
Today I drank a bit of tea with milk and sugar! I also had some butternut and sweet potato soup - infact I dunked my face in it and got quite a fright. But it was yummy. We went to a party and I got my face painted like a butterfly and then I jumped and jumped on the fairy jumping castle. For dinner I tried Jada's pureed chicken and vegetables and I even suprised myself. I did pretty well!
Mom's comment: Camden did brilliantly today. It was the best I have seen her 'eat'. She is trying so hard and it's all self-motivated which is great. Her poo has also changed colour for the first time ever. This must mean something is going down. As mom and dad always ask her: "Who's the champion of the world?" Without a doubt "Camden!"
DAY 17: Sunday 6 December 2009
I woke I think at about 01h30 and really did not want to go back to sleep for hours. I was thirsty, hungry, confused - just totally unsettled. Eventually my mom and dad were so exhausted that they had to do a bit of controlled crying to get me to sleep again. The day was okay. We had breakfast at the bakery and i sucked on some salmon, had a lick of some chocolate croissant, tried to eat some spanokopita and sucked on a spring roll. We went to friends for lunch and i favoured the mielies but just licked them. When desert came I licked some watermelon and tried a blue berry or two and actually bit them so got to taste the juice. No gagging.
Mom's comment: She is so hungry that it is frightening the hell out of me. She seems so close to eating yet so far. I really feel deep down that she can do it but she is seriously loosing weight and looks like she is in a bit dazed. She has come along way though so I guess we have just got to find a bit more strength to keep going a little longer.
DAY 18: Monday 7 December 2009
I am starving and skinny and clingy but am still trying to eat. My mom is trying so hard to get me to drink some of my special formula (loaded with calories) instead of just water but I only like water. I did taste alot of things today and quite liked the butternut / sweet potato soup. I put my entire face into it a few times and sipped a little. Eating is pretty messy.
Mom's comment: I was told by another mom that this programme is so hectic. She was not kidding. This is one of the toughest things I have ever been through. We weighed Camden today and she has lost 1.65kg which is huge. She tried so many things all throughout the day today but it is so hard to judge what is going down as she pushes everything out of her mouth. We leave for holiday in 6 more sleeps time, so I await the professor at the clinic's comments on the intake diary I have filled in as to our next steps. Do we pull the plug and plan a trip to the Graz clinic next year or do we continue? She is without a doubt making progress - it's just the weight loss that is starting to become a problem.
I woke I think at about 01h30 and really did not want to go back to sleep for hours. I was thirsty, hungry, confused - just totally unsettled. Eventually my mom and dad were so exhausted that they had to do a bit of controlled crying to get me to sleep again. The day was okay. We had breakfast at the bakery and i sucked on some salmon, had a lick of some chocolate croissant, tried to eat some spanokopita and sucked on a spring roll. We went to friends for lunch and i favoured the mielies but just licked them. When desert came I licked some watermelon and tried a blue berry or two and actually bit them so got to taste the juice. No gagging.
Mom's comment: She is so hungry that it is frightening the hell out of me. She seems so close to eating yet so far. I really feel deep down that she can do it but she is seriously loosing weight and looks like she is in a bit dazed. She has come along way though so I guess we have just got to find a bit more strength to keep going a little longer.
DAY 18: Monday 7 December 2009
I am starving and skinny and clingy but am still trying to eat. My mom is trying so hard to get me to drink some of my special formula (loaded with calories) instead of just water but I only like water. I did taste alot of things today and quite liked the butternut / sweet potato soup. I put my entire face into it a few times and sipped a little. Eating is pretty messy.
Mom's comment: I was told by another mom that this programme is so hectic. She was not kidding. This is one of the toughest things I have ever been through. We weighed Camden today and she has lost 1.65kg which is huge. She tried so many things all throughout the day today but it is so hard to judge what is going down as she pushes everything out of her mouth. We leave for holiday in 6 more sleeps time, so I await the professor at the clinic's comments on the intake diary I have filled in as to our next steps. Do we pull the plug and plan a trip to the Graz clinic next year or do we continue? She is without a doubt making progress - it's just the weight loss that is starting to become a problem.
DAY 19: Tuesday 8 December 2009
I am definately not a vegetarian like my mom. I 'ate' some sausage and pap with Nellie (one of my guardian angels who look after me) and I loved it! I did the usual spitting out, however, some bits went down as they were in my mouth and I had a few sips of water and then they were gone? Cool!
Mom's comment: Sausages! Fantastic! Whatever she likes she can have. Although only small amounts again that went down and alot of pushing the food out of her mouth, she is really showing some progress. She also had more butternut soup for breakfast and a bit of pureed veges at lunch - again we are not sure how much was swallowed but we keep going until we hear what the professor says. She absolutely refuses to drink milk - only water. She is in good spirits today - where she gets her energy is amazing!
DAY 20: Wednesday 9 December 2009
I am still trying really hard. Today I sucked on alot of dark Lindt chocolate - I even fell asleep with it tightly clutched in my hand and when I woke my entire face was smeared in it.
Mom's comment: I cannot believe we are on day 20 already. She is really looking drained although her mood is still okay. She did brilliantly on dark chocolate today. She was sucking it beautifully which is great for building a bit of muscle tone. She definately swallowed some but after a while some started to come through her nose which I think is from her soft palate being a bit floppy - a problem we have had from the start. Mom is seriously taking strain - a strong shot of something is on the dinner menu for me tonight. The professor is concerned that her weight has dropped so much but says that if there is oral activity and we feel something is going down - this is a good sign.
DAY 21: Thursday 10 December 2009
Again a big chocolate day today for me - maybe its a comfort food (like it is for most girls) but probably because I can suck on it and it melts in my mouth. My mom took alot of videos today of me trying to eat all sorts of stuff. The professor at the clinic in Graz wants to have a look. I am very ratty and almost frantic at times. I take food, lick it or suck, drop it on the floor and then ask for more.
Mom's comment: It's time to make some decisions as Camden's weight loss is becoming critical. The professor has said we should increase her tube fee to an extra 50ml and so we will give her 2 tube feeds of 100ml a day. I am starting to feel a bit despondent as she has reached a point but just cannot take it further. Jenny (Camden's amazing speech therapist ) said today that Cam seems to be able to bite/suck food but just cannot work out the tongue manipulation and chewing part that then ends in a swallow. So she is almost missing the middle piece of the puzzle? The only thing going down at this stage is a bit of dark chocolate that she sucks on and sips of water.
I am definately not a vegetarian like my mom. I 'ate' some sausage and pap with Nellie (one of my guardian angels who look after me) and I loved it! I did the usual spitting out, however, some bits went down as they were in my mouth and I had a few sips of water and then they were gone? Cool!
Mom's comment: Sausages! Fantastic! Whatever she likes she can have. Although only small amounts again that went down and alot of pushing the food out of her mouth, she is really showing some progress. She also had more butternut soup for breakfast and a bit of pureed veges at lunch - again we are not sure how much was swallowed but we keep going until we hear what the professor says. She absolutely refuses to drink milk - only water. She is in good spirits today - where she gets her energy is amazing!
DAY 20: Wednesday 9 December 2009
I am still trying really hard. Today I sucked on alot of dark Lindt chocolate - I even fell asleep with it tightly clutched in my hand and when I woke my entire face was smeared in it.
Mom's comment: I cannot believe we are on day 20 already. She is really looking drained although her mood is still okay. She did brilliantly on dark chocolate today. She was sucking it beautifully which is great for building a bit of muscle tone. She definately swallowed some but after a while some started to come through her nose which I think is from her soft palate being a bit floppy - a problem we have had from the start. Mom is seriously taking strain - a strong shot of something is on the dinner menu for me tonight. The professor is concerned that her weight has dropped so much but says that if there is oral activity and we feel something is going down - this is a good sign.
DAY 21: Thursday 10 December 2009
Again a big chocolate day today for me - maybe its a comfort food (like it is for most girls) but probably because I can suck on it and it melts in my mouth. My mom took alot of videos today of me trying to eat all sorts of stuff. The professor at the clinic in Graz wants to have a look. I am very ratty and almost frantic at times. I take food, lick it or suck, drop it on the floor and then ask for more.
Mom's comment: It's time to make some decisions as Camden's weight loss is becoming critical. The professor has said we should increase her tube fee to an extra 50ml and so we will give her 2 tube feeds of 100ml a day. I am starting to feel a bit despondent as she has reached a point but just cannot take it further. Jenny (Camden's amazing speech therapist ) said today that Cam seems to be able to bite/suck food but just cannot work out the tongue manipulation and chewing part that then ends in a swallow. So she is almost missing the middle piece of the puzzle? The only thing going down at this stage is a bit of dark chocolate that she sucks on and sips of water.