- About me
- Netcoaching (week1&2)
- Netcoaching (week3)
- Netcoaching (week4&5)
- Netcoaching (week 6&7)
- Netcoaching (week8&9)
- Learning to Eat (week10to13)
- Learning to Eat (week14to18)
- Learning to Eat (week19to26)
- Netcoaching Attempt 2
- I can eat
- Life without tube feeds
- Messages
- Miracle Blog
- Special Links
- Photos
- Tips for netcaoching
DAY 22: Friday 11 December 2009
I drank a tiny bit of tea today. And had some more dark Lindt chocolate. And went to my Gagga (granny) for dinner. She mad a delicious melanzane and I had alot of tastes but still pushed it out even though it was so good. I am still trying to eat but spitting most of it out. And I just want 'mama'.
Mom's comment: She kept me up for a huge portion of the night. She just could not settle. It's probably the hunger. I am still so concerned about her weight loss? I am waiting for the professor to get back to regarding the feeding video that I sent her.
DAY 23: Saturday 12 December 2009
Saw my wonderful 'doctr' (as i pronounce it) this morning. He weighed me and did a thorough check of my chest, ears etc. I tried all sorts of things today and did quite well on pureed butternut. We also made pizza. My dad is a pizza genius and I just sucked and sucked and sucked on it. Yummy!
Mom's comment: I am super tired after a really rough night. I think I was lucky if I got about 2 hours sleep. She had a check-up this morning and weighs 8.76kg! The professor sent me an email this morning and has asked us to give her some water through her tube at night when she is asleep with some maltodextrin added to it - this will give her a bit of energy. And to give her 200ml of her formula also at night. Doing it when she is asleep is important as we are trying to disassociate feeding with the tube. The professor says that we need to stabilise her weight and even possibly get her back upto 9kg to keep her out of danger but still keep her hungry during the day to encourage her to experiment with her mouth activity. She says Camden is still showing loads of resistance and needs more time. Camden's paediatrician is happy for us to proceed for now as long as we are increasing her night feeds. He feels that we have come so far and she is showing some improvement that to stop now would not be right. He will run some blood tests before we leave for holiday. I feel a bit more confident that her paed is happy for us to continue and that we are giving her a bit more calories.
DAY 24: Sunday 13 December 2009
I slept a bit better last night. My dad woke and gave me a bit of extra formula in the middle of the night. I am still trying all sorts of food. We went to the park and had loads of fun on the big and small slides. I still have energy.
Mom's comment: I feel a bit better now that we are giving her a bit more calories and fluid. She is still so skinny and clingy and really trying hard to eat. But not yet.
DAY 25: Monday 14 December 2009
I went to the hospital to have some blood test done. It was pretty awful as they love taking blood from my neck vein. I had two long sleeps today so I must be a bit more lethargic than normal. I continue to try all sorts of stuff and I am alos giving chewing a go but I still spit most of it out. The house has food trails all over the place (much to the dogs delight.)
Mom's comment: Although we are giving her more formula and liquids, I weighed her tonight and she seems to have lost a bit more weight. This is really a worry. So I have asked the professor if we should increase the night feed even more. She did give chewing a go tonight, but unfortunately without a swallow. And she knawed at a mielie for ages and really seemed to be enjoying it. So hopefully this is all strengthening her mouth muscles. I hope, and I pray.
DAY 26 27 28 29 30 : Tuesday 15 - Saturday 19 December 2009
We went away and so my mom has been a bit slack at updating the site. We were in the forest for a couple of days and there was no signal. Even though we are on holiday, my mom and dad and pushing on with the programme. They are giving me a bit more food during the night and during the day I am still trying to eat. Like before I am trying all sorts of things and have taken a particular liking to rice. Rice with chicken, rice with fish, rice with broccoli - whatever but it's got to be with rice. Broccoli (believe it or not) is nice. I had a broccoli feast in the car on the way to our holiday. (see below). I have been sipping small amounts of soup. And I see Jada in mom's arms often having a bottle and it looks cosy so I decided to give it a go. I maybe only took 5-10ml of formula but it was a really new experience for me (since I have never taken a bottle before ever!).
Mom's comment: Yes we are on holiday and continuing with the programme. The fact that we are giving her a bit more feed at night makes it slightly less stressful as she seems to not be loosing more weight. She is definately making progress but still not really eating too much as she still spits it out. It's a very messy process. She is biting more and trying to chew a bit but once she has chewed, she spits it out again. She has swallowed small amounts of soup and pureed food. The asking for a bottle is a very new and quite amazing thing as she has never shown this desire before and she actually tried to suck on it and I saw a swallow or two. She is still resisting the swallow on solid food. But with Camden we feel she needs time, months of time, so we keep going slowly.
DAY 31 32 33: Sunday 20 - Tuesday 22 December 2009
The beach is so cool. I just love the water. I am pretty fearless and want to just dive in. I am giving my dad's beard grey hairs (literally). My dad built us a sand castle and I kept smashing the turrets. He also made us a sand pool and Berlynn and me piled all our beach toys into it and played and played. I am still skinny (my cosies my mom bought for me are all a bit baggy) but I try eat almost everything. I 'eat' my best when mom and dad are eating with me. I even tried some of my mom's salad. I still love rice. Rice for breakfast, rice for lunch - whenever. I chew and chew and chew which the professor says is good as it's all part of learning a new way of eating for me.
Mom's comment: I think the holiday is so good for her. It is completely exhausting for me and dad as it is so hands on 24/7 and her sleep is quite erratic. The great thing is that we are around all the time and get to sit and eat meals together. She just wants to get involved, which is very special as 3 or so weeks ago she just was not interested in food at all. She insists on sitting on either mine or dad's lap when 'eating'. Her chewing is definately improving (Jenny will be happy to know this) and even though she still spits alot of it out, the pieces of food (like chicken, broccoli, bread, cheese) that she does chew are getting smaller so the chewing is getting better. The professor is happy with her progress and says that we need to remember that a peg(tube) dependancy produces a mind that is not confident to do 'normal things' because it has never learnt to do them. So she encourages us to just keep going.
DAY 34: Wednesday 23 December 2009
We went to uShaka Marine world today and saw some big fish and a dolphin show. I was a little ratty - it is really hot and humid and I am so hungry. But when I saw the kiddies play pools and slides and things I forgot about everything and just wanted to swim. It was brilliant until it was time to go. Berlynn and me just wanted to stay and play forever but we had friends coming for lunch. I sat with my mom and tasted her salad, dad's yummy home made ciabatta, a bite of an olive, some pesto and hummus and tzatziki and I stuck my finger in the olive oil and licked it.
Mom's comment: She tasted really well today but still spits most of it out - all over the place. It is so messy. When it's hot I really worry that she is going to dehydrate so we watch that closely. She is still weighing about 8.7/8.8kg.
I drank a tiny bit of tea today. And had some more dark Lindt chocolate. And went to my Gagga (granny) for dinner. She mad a delicious melanzane and I had alot of tastes but still pushed it out even though it was so good. I am still trying to eat but spitting most of it out. And I just want 'mama'.
Mom's comment: She kept me up for a huge portion of the night. She just could not settle. It's probably the hunger. I am still so concerned about her weight loss? I am waiting for the professor to get back to regarding the feeding video that I sent her.
DAY 23: Saturday 12 December 2009
Saw my wonderful 'doctr' (as i pronounce it) this morning. He weighed me and did a thorough check of my chest, ears etc. I tried all sorts of things today and did quite well on pureed butternut. We also made pizza. My dad is a pizza genius and I just sucked and sucked and sucked on it. Yummy!
Mom's comment: I am super tired after a really rough night. I think I was lucky if I got about 2 hours sleep. She had a check-up this morning and weighs 8.76kg! The professor sent me an email this morning and has asked us to give her some water through her tube at night when she is asleep with some maltodextrin added to it - this will give her a bit of energy. And to give her 200ml of her formula also at night. Doing it when she is asleep is important as we are trying to disassociate feeding with the tube. The professor says that we need to stabilise her weight and even possibly get her back upto 9kg to keep her out of danger but still keep her hungry during the day to encourage her to experiment with her mouth activity. She says Camden is still showing loads of resistance and needs more time. Camden's paediatrician is happy for us to proceed for now as long as we are increasing her night feeds. He feels that we have come so far and she is showing some improvement that to stop now would not be right. He will run some blood tests before we leave for holiday. I feel a bit more confident that her paed is happy for us to continue and that we are giving her a bit more calories.
DAY 24: Sunday 13 December 2009
I slept a bit better last night. My dad woke and gave me a bit of extra formula in the middle of the night. I am still trying all sorts of food. We went to the park and had loads of fun on the big and small slides. I still have energy.
Mom's comment: I feel a bit better now that we are giving her a bit more calories and fluid. She is still so skinny and clingy and really trying hard to eat. But not yet.
DAY 25: Monday 14 December 2009
I went to the hospital to have some blood test done. It was pretty awful as they love taking blood from my neck vein. I had two long sleeps today so I must be a bit more lethargic than normal. I continue to try all sorts of stuff and I am alos giving chewing a go but I still spit most of it out. The house has food trails all over the place (much to the dogs delight.)
Mom's comment: Although we are giving her more formula and liquids, I weighed her tonight and she seems to have lost a bit more weight. This is really a worry. So I have asked the professor if we should increase the night feed even more. She did give chewing a go tonight, but unfortunately without a swallow. And she knawed at a mielie for ages and really seemed to be enjoying it. So hopefully this is all strengthening her mouth muscles. I hope, and I pray.
DAY 26 27 28 29 30 : Tuesday 15 - Saturday 19 December 2009
We went away and so my mom has been a bit slack at updating the site. We were in the forest for a couple of days and there was no signal. Even though we are on holiday, my mom and dad and pushing on with the programme. They are giving me a bit more food during the night and during the day I am still trying to eat. Like before I am trying all sorts of things and have taken a particular liking to rice. Rice with chicken, rice with fish, rice with broccoli - whatever but it's got to be with rice. Broccoli (believe it or not) is nice. I had a broccoli feast in the car on the way to our holiday. (see below). I have been sipping small amounts of soup. And I see Jada in mom's arms often having a bottle and it looks cosy so I decided to give it a go. I maybe only took 5-10ml of formula but it was a really new experience for me (since I have never taken a bottle before ever!).
Mom's comment: Yes we are on holiday and continuing with the programme. The fact that we are giving her a bit more feed at night makes it slightly less stressful as she seems to not be loosing more weight. She is definately making progress but still not really eating too much as she still spits it out. It's a very messy process. She is biting more and trying to chew a bit but once she has chewed, she spits it out again. She has swallowed small amounts of soup and pureed food. The asking for a bottle is a very new and quite amazing thing as she has never shown this desire before and she actually tried to suck on it and I saw a swallow or two. She is still resisting the swallow on solid food. But with Camden we feel she needs time, months of time, so we keep going slowly.
DAY 31 32 33: Sunday 20 - Tuesday 22 December 2009
The beach is so cool. I just love the water. I am pretty fearless and want to just dive in. I am giving my dad's beard grey hairs (literally). My dad built us a sand castle and I kept smashing the turrets. He also made us a sand pool and Berlynn and me piled all our beach toys into it and played and played. I am still skinny (my cosies my mom bought for me are all a bit baggy) but I try eat almost everything. I 'eat' my best when mom and dad are eating with me. I even tried some of my mom's salad. I still love rice. Rice for breakfast, rice for lunch - whenever. I chew and chew and chew which the professor says is good as it's all part of learning a new way of eating for me.
Mom's comment: I think the holiday is so good for her. It is completely exhausting for me and dad as it is so hands on 24/7 and her sleep is quite erratic. The great thing is that we are around all the time and get to sit and eat meals together. She just wants to get involved, which is very special as 3 or so weeks ago she just was not interested in food at all. She insists on sitting on either mine or dad's lap when 'eating'. Her chewing is definately improving (Jenny will be happy to know this) and even though she still spits alot of it out, the pieces of food (like chicken, broccoli, bread, cheese) that she does chew are getting smaller so the chewing is getting better. The professor is happy with her progress and says that we need to remember that a peg(tube) dependancy produces a mind that is not confident to do 'normal things' because it has never learnt to do them. So she encourages us to just keep going.
DAY 34: Wednesday 23 December 2009
We went to uShaka Marine world today and saw some big fish and a dolphin show. I was a little ratty - it is really hot and humid and I am so hungry. But when I saw the kiddies play pools and slides and things I forgot about everything and just wanted to swim. It was brilliant until it was time to go. Berlynn and me just wanted to stay and play forever but we had friends coming for lunch. I sat with my mom and tasted her salad, dad's yummy home made ciabatta, a bite of an olive, some pesto and hummus and tzatziki and I stuck my finger in the olive oil and licked it.
Mom's comment: She tasted really well today but still spits most of it out - all over the place. It is so messy. When it's hot I really worry that she is going to dehydrate so we watch that closely. She is still weighing about 8.7/8.8kg.