- 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
My diary of learning to eat - week 1
There is a saying: "Sometimes you have to be cruel to be kind." Let's hope so.
DAY 1: Friday 20 November 2009
Today was the first day of my netcoaching programme with the notube.at clinic in Graz Austria. My food through the tube has been cut in half. So my last tube feed was at 8pm last night and I will only get another tube feed at 3pm. I drank a tiny bit of water with a sports bottle. And I licked an ice cream and bit the cone but thrust the bits out onto the floor. My mom put alot of different types of food and water bottles on a small table for me in the family room. I played with it and left a trail of food around the house. The dogs are loving this.
Mom's comment: No radical change in food behaviour yet.
DAY 2: Saturday 21 November 2009
Again no tube feed from 8pm to 3pm today. We had a busy day - out and about. Mom packed me a lunchbox with flings, chocolate, yoghurt and biscuits. I don't mind licking the flings a little bit but I loose interest very quickly. Again I sipped some water. We were at friends for lunch and I saw a guest eating soup. I pointed to it as I seemed to like the look of it so my mom got me some in a bowl. But I just looked at it and lost interest. I was quite tired this afternoon.
Mom's comment: It was great to see Camden pointing out a particular food that she wanted. But unfortunately that's as far as it went.
DAY 3: Sunday 22 November 2009
Woke up full of beans today. Again I will not be tube fed from 8pm last night to 3pm this afternoon. I wanted water as soon as I woke up. But just little sips. I licked a spoon with some cheesy sauce on it but after one lick lost interest. As 3pm gets closer I get more ratty. I think it's hunger.
Moms comment: She licked the lid of a yoghurt which was great. But still no radical change. She still seems scared to eat. She did want an ice cream cone but gagged on a small piece until it came out. I ignored the gag. She recovered quite quickly but did not want any more cone. She is definately pointing to her mouth alot and keeps pulling me to the cupboard to get food but if she puts any in her mouth, she spits it out again.
DAY 4 : Monday 23 November 2009
When I got up I wanted some water again. I drank tiny sips from the running tap in the bathroom. I continue to ask for food but I if I eat it I spit it out again. My mom has set up a small table in the family room and she puts all sorts of different foods there. I am intrigued by it all but I have not really eaten any of it yet.
Moms comment: Again no radical change yet besides pointing to her mouth and asking you to get food out of the cupboard. I am feeling a bit anxious - is it still early days or will she eat?
DAY 5 : Tuesday 24 November 2009
Still only happy to drink water. Anything else that I put in my mouth I spit out or gag out. My bought me a cute tin tea set with flowers on it so we had a tea party. I drank the water in the little cups.
Moms comment: Still no radical change today. She is still happy and full of cheeky spirit. She gagged today on crisps (not ideal food for her but she insisted). The interesting thing was that as soon as the painful gag episode was over she reached for more.
DAY 6 : Wednesday 25 November 2009
Oh boy! It just got tougher. I am now on one tube feed a day - at night. So my intake is now 1/4 of what I used to get. I am still sipping water but as far as food goes - nothing yet. My mom even put clear soup in a sports bottle but I know it's soup.
Moms comment: Ok, now it's stressful. It is not that easy to starve your child. The clinic assures me that all the motions she is going through are normal. So we keep going and hoping.
DAY 7 : Thursday 26 November 2009
I can definately feel something is up - probably hunger. A very new sensation for me. Food is a bit more interesting now and I watch others eating very closely. I am still a little hesitant to actually eat though.
Moms comment: She is still as happy and as cheeky as ever. Thank goodness. She is definately showing even more interest in food today but she doesn't really swallow anything yet. I put a bit of sugar in some water and we had a minature tea party and she seemed to drink very small sips of it. So at least it's a slightly different taste other than water. She did suck on some bread with hummus on it for a bit with Berlynn at lunchtime. It ended in a painful gag. I tried not to interfere to much to see if she could regulate it - eventually she did. Sent the professor at notube.at a video of her "eating behaviour". They said: "She is very very fine just continue and enjoy and observe everything." Not sure about the 'enjoy' part but yes we continue.
My diary of learning to eat - week 2
DAY 8: Friday 27 November 2009
Okay, I think I am hungry. I Keep taking in sips of water. Infact it's the first thing I did when I woke this morning. Food is all around me and I ask for more of it all the time. I play with it, feed it to my speech therapist, my sisters, my mom and dad and Jack and Russel, but I am still not to sure about it. I did however, suck on a few artichoke leaves tonight! My mom and dad love artichokes.
Mom's comment: Today I really feel like I am the most blessed mom in the entire world. Yes, maybe getting all emotional but Camden just continues to amaze me with her incredible inner strength. Some people ask me how I cope/d and I say it's her unbelievable zest for life, her willpower, her happy smile, her cute laughter, her sheer determination - she has been through so much but there is no way this girl let's that get her down - she's the strongest person I know and I guess just being with her and sharing with her is how I cope. It's pretty stressful right now to watch her 'starve'. She is a bit pale and has reddish rings under her eyes. She has also lost a bit of weight (which is tough, as we spent a good year and a bit trying to get her to gain weight) but we continue to give her her chance that we hope will change her life forever.
DAY 9: Saturday 28 November 2009
Today I am starving! We went to a birthday party. I was very interested in the kiddies sweet table and sucked on a few nicnaks. But then I got my hands on a spanokopita and I ate some! Whoooohoooo! No gagging even!
Mom's comment: She definately ate some spanokopita today at the party! We saw some spinach when we were changing her nappy so she swallowed some. Wow! This is huge progress. She also sucked on some of her Dad's delicious pizza at dinner time. So we are seeing major changes.
DAY 10: Sunday 29 November 2009
Hunger is setting in. I am now putting all sorts of food to my mouth. I even sucked on some salmon at breakfast (now I know why Berlynn raves about it so much). We bought a whole lot of things from Fornous bakery like croissants, mini quiches, spring rolls, cheese. Mmmm I had a taste of them all. Still battling to swallow but am really trying. My dad's car looked like a food bomb had exploded. I even wanted some sprouts (pretty dangerous as you really have to chew them) but I had a go none the less. Gagged a bit but managed to overcome it and we found some in my nappy - so must have swallowed them!
Mom's comment: I never used to believe in miracles but now I do. There are only a few mom's who would understand this, but to watch my child put food willingly, on her own terms into her mouth for the first time and look like she is enjoying it has bought so much joy, happy tears and hope into our lives. It's overwhelming! She has only lost 150 grams in 10 days so we continue with the hectic but very hopeful notube programme.
DAY 11: Monday 30 November 2009
Not only am I getting hungry but I am also getting messy. Still not sure that I trust food yet but I am definately tasting more and more. I even fell asleep holding a piece of pasta.
Mom's comment: She eats best when there is either her sister or mom and dad eating with her. She just loved sucking on a piece of very dark chocolate and the mess was just fantastic.
Okay, I think I am hungry. I Keep taking in sips of water. Infact it's the first thing I did when I woke this morning. Food is all around me and I ask for more of it all the time. I play with it, feed it to my speech therapist, my sisters, my mom and dad and Jack and Russel, but I am still not to sure about it. I did however, suck on a few artichoke leaves tonight! My mom and dad love artichokes.
Mom's comment: Today I really feel like I am the most blessed mom in the entire world. Yes, maybe getting all emotional but Camden just continues to amaze me with her incredible inner strength. Some people ask me how I cope/d and I say it's her unbelievable zest for life, her willpower, her happy smile, her cute laughter, her sheer determination - she has been through so much but there is no way this girl let's that get her down - she's the strongest person I know and I guess just being with her and sharing with her is how I cope. It's pretty stressful right now to watch her 'starve'. She is a bit pale and has reddish rings under her eyes. She has also lost a bit of weight (which is tough, as we spent a good year and a bit trying to get her to gain weight) but we continue to give her her chance that we hope will change her life forever.
DAY 9: Saturday 28 November 2009
Today I am starving! We went to a birthday party. I was very interested in the kiddies sweet table and sucked on a few nicnaks. But then I got my hands on a spanokopita and I ate some! Whoooohoooo! No gagging even!
Mom's comment: She definately ate some spanokopita today at the party! We saw some spinach when we were changing her nappy so she swallowed some. Wow! This is huge progress. She also sucked on some of her Dad's delicious pizza at dinner time. So we are seeing major changes.
DAY 10: Sunday 29 November 2009
Hunger is setting in. I am now putting all sorts of food to my mouth. I even sucked on some salmon at breakfast (now I know why Berlynn raves about it so much). We bought a whole lot of things from Fornous bakery like croissants, mini quiches, spring rolls, cheese. Mmmm I had a taste of them all. Still battling to swallow but am really trying. My dad's car looked like a food bomb had exploded. I even wanted some sprouts (pretty dangerous as you really have to chew them) but I had a go none the less. Gagged a bit but managed to overcome it and we found some in my nappy - so must have swallowed them!
Mom's comment: I never used to believe in miracles but now I do. There are only a few mom's who would understand this, but to watch my child put food willingly, on her own terms into her mouth for the first time and look like she is enjoying it has bought so much joy, happy tears and hope into our lives. It's overwhelming! She has only lost 150 grams in 10 days so we continue with the hectic but very hopeful notube programme.
DAY 11: Monday 30 November 2009
Not only am I getting hungry but I am also getting messy. Still not sure that I trust food yet but I am definately tasting more and more. I even fell asleep holding a piece of pasta.
Mom's comment: She eats best when there is either her sister or mom and dad eating with her. She just loved sucking on a piece of very dark chocolate and the mess was just fantastic.
DAY 12: Tuesday 1 December 2009
Today I am really tired. I am not my cheeky, bouncy self. My energy levels are low and I just want Mom to carry me all the time. I tried to have a bit of lunch with Berlynn and sort of chewed a bit but then spat it out.
Mom's comment: I can't believe we have been on the programme for 12 days already. It's really starting to get tough on her. To watch her energy levels drop is making me a little nervous. The professor says her mood swing is good and normal and she needs to learn that mom's comfort unfortunately will not take the hunger and low energy levels away.
DAY 13: Wednesday 2 December 2009
I only tried to taste a bit today but again most of it I spit out my mouth. I drank sips of water throughout the day and my mom feels that I am not spilling as much onto my chest as I used to.
I have become very possesive over my food (even though I am not eating it) and when Berlynn wants some I say "Naaaaah!" and pull it away.
Mom's comment: I am feeling super anxious today and quite out of control of the situation. It's been 13 days and she is not really eating yet. She still won't drink anything other than water. She is still clingy but the professor says we must expect this as she now has to learn that hanging onto mom unfortunately won't take the hunger away.
DAY 14: Thursday 3 December 2009
Rice cakes! Rice cakes! Give me more rice cakes! I think I went through an entire packet today. I just bit them, tasted them for a bit and then spat them out leaving a trail through the house, down the road, in the park, on the swing and then back home again.
Mom's comment: I guess I have to stock up on rice cakes. She drank only water again throughout the day and put alot of rice cakes, a bit of dark chocolate, and some breyani into her mouth but thrust it out again. Thank goodness for our dogs Jack and Russel - we may have to rename them Hoover and Hoover. The feedback from the professor in Austria was that they think it is going well and we need to allow her time to develop a feeling of self-achievement and pride and then to be patient and confident.
Today I am really tired. I am not my cheeky, bouncy self. My energy levels are low and I just want Mom to carry me all the time. I tried to have a bit of lunch with Berlynn and sort of chewed a bit but then spat it out.
Mom's comment: I can't believe we have been on the programme for 12 days already. It's really starting to get tough on her. To watch her energy levels drop is making me a little nervous. The professor says her mood swing is good and normal and she needs to learn that mom's comfort unfortunately will not take the hunger and low energy levels away.
DAY 13: Wednesday 2 December 2009
I only tried to taste a bit today but again most of it I spit out my mouth. I drank sips of water throughout the day and my mom feels that I am not spilling as much onto my chest as I used to.
I have become very possesive over my food (even though I am not eating it) and when Berlynn wants some I say "Naaaaah!" and pull it away.
Mom's comment: I am feeling super anxious today and quite out of control of the situation. It's been 13 days and she is not really eating yet. She still won't drink anything other than water. She is still clingy but the professor says we must expect this as she now has to learn that hanging onto mom unfortunately won't take the hunger away.
DAY 14: Thursday 3 December 2009
Rice cakes! Rice cakes! Give me more rice cakes! I think I went through an entire packet today. I just bit them, tasted them for a bit and then spat them out leaving a trail through the house, down the road, in the park, on the swing and then back home again.
Mom's comment: I guess I have to stock up on rice cakes. She drank only water again throughout the day and put alot of rice cakes, a bit of dark chocolate, and some breyani into her mouth but thrust it out again. Thank goodness for our dogs Jack and Russel - we may have to rename them Hoover and Hoover. The feedback from the professor in Austria was that they think it is going well and we need to allow her time to develop a feeling of self-achievement and pride and then to be patient and confident.