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- Netcoaching (week3)
- Netcoaching (week4&5)
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- Netcoaching (week8&9)
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- Learning to Eat (week14to18)
- Learning to Eat (week19to26)
- Netcoaching Attempt 2
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WEEK19 : Friday 26 March - Thursday 1 April 2010
It was Berlynn's actual Birthday this week. She is so big. She turned 5. She got a great art easel for her birthday so we've been drawing and painting like crazy. It's got two sides so sometimes Berlynn paints the one side and I paint the other. I am making lots of messy paintings but am really proud of them and my Mom has put them up in my bedroom. My big sister is trying to help me learn my colours when we paint together. I am lucky to have such a great big sister to teach me nice things. This week I was not interested in food or my bottle at all because I have had so much phlem in my oesophagus that really worries me and makes trying to eat a very scary thing as I gag and choke almost instantly. Towards the end of this week the phlem got even worse and has turned into a bad cold so I refuse to take anything orally except bits of water throughout the day. I am running a slight fever again and am very lethargic and just want to sleep and be near my mom all day. I don't like being sick too much and hope that I get better soon.
Mom's comment: Camden has been loving doing a bit of messy painting. It is so nice to see her proud smile when she is finished. She loves getting involved with the same thing that Berlynn is doing. She has got sick again unfortunately and we are moving into a long Easter weekend - not a great time to get ill. The last place we want to take her is to the emergency room. So, we have increased her nebulising and chest physio and are taking her temperature regularly. She is completely miserable when she has a fever but once we break it, she is her cheeky self again, thank goodness. If it gets worse, we will try and contact her doctor, if he is around. Her food intake has been very poor this week - I think due to the increased amount of phlem. She absolutely refuses all food and drink except water. She has also started to gag after some of her tube feeds again. It is a very painful gag, that I think is from a gas bloat compounded by the inability to burp. I hate it so much and wish I could just take the gag, the pain, the discomfort away forever. It is so hard to watch and all you can offer her is comfort. Such a little person and she has to endure so much pain. And then she has the amazing ability to bounce back and be happy again and it's amazing. I have had lengthy discussions via email with the professor in Graz as to what our steps forward with her should be. I have communicated her doctors concerns and what she has suggested is that we continue with the 3 x tube night feeds until she is weighing about 9.5kg. Then we should try the programme again. So probably towards the end of April. She weighs about 9kgs now.
It was Berlynn's actual Birthday this week. She is so big. She turned 5. She got a great art easel for her birthday so we've been drawing and painting like crazy. It's got two sides so sometimes Berlynn paints the one side and I paint the other. I am making lots of messy paintings but am really proud of them and my Mom has put them up in my bedroom. My big sister is trying to help me learn my colours when we paint together. I am lucky to have such a great big sister to teach me nice things. This week I was not interested in food or my bottle at all because I have had so much phlem in my oesophagus that really worries me and makes trying to eat a very scary thing as I gag and choke almost instantly. Towards the end of this week the phlem got even worse and has turned into a bad cold so I refuse to take anything orally except bits of water throughout the day. I am running a slight fever again and am very lethargic and just want to sleep and be near my mom all day. I don't like being sick too much and hope that I get better soon.
Mom's comment: Camden has been loving doing a bit of messy painting. It is so nice to see her proud smile when she is finished. She loves getting involved with the same thing that Berlynn is doing. She has got sick again unfortunately and we are moving into a long Easter weekend - not a great time to get ill. The last place we want to take her is to the emergency room. So, we have increased her nebulising and chest physio and are taking her temperature regularly. She is completely miserable when she has a fever but once we break it, she is her cheeky self again, thank goodness. If it gets worse, we will try and contact her doctor, if he is around. Her food intake has been very poor this week - I think due to the increased amount of phlem. She absolutely refuses all food and drink except water. She has also started to gag after some of her tube feeds again. It is a very painful gag, that I think is from a gas bloat compounded by the inability to burp. I hate it so much and wish I could just take the gag, the pain, the discomfort away forever. It is so hard to watch and all you can offer her is comfort. Such a little person and she has to endure so much pain. And then she has the amazing ability to bounce back and be happy again and it's amazing. I have had lengthy discussions via email with the professor in Graz as to what our steps forward with her should be. I have communicated her doctors concerns and what she has suggested is that we continue with the 3 x tube night feeds until she is weighing about 9.5kg. Then we should try the programme again. So probably towards the end of April. She weighs about 9kgs now.
WEEK20-23 : Friday 2 April - Thursday 22 April 2010
It's been a good few weeks. I have managed to get better and stay well. 'Touch wood'. I am still receiving 3 tube feeds which are definately making me gain weight. I am sometimes hungry and sometimes just not interested at all. I get these ravenous moments and I just want to 'gorge' on big pieces of chicken or an entire packet of ham. The photos look like I am eating but what I do is chew and suck a bit and then spit - to Jack and Russel's delight.
It was my little sisters birthday - she turned one! We had a Teddy Bear's pizza picnic party. My Mom made a teddy cake and daddy made teddy faced pizza with everyone. I did try and eat some. We also jumped on a teddy jumping castle and smashed a teddy pinata. It was so much fun. I keep going to my mom now and saying: "Party Me! "Party Me! "Party Me!" I just love to party.
Mom's comment: We have been a bit slack at updating the site at the moment as we are focused on our core goal at the moment - getting her to gain weight. She is definately gaining and weighs about 9.4kg. We had a small incident of her feeding tube falling out without us knowing. You have 20 minutes before the hole starts to close and we only noticed it had fallen out about 1 to 1.5 hours after it had happened. I tried to put it back but she screamed in agony. I rushed her to her paediatrician and he gave it a good go. I did not look but just held her hands as tightly as I could. She screamed and screamed but was so incredibly brave. Imagine having a tube pushed through a closed wound. Eina! The doctor managed to get it back in - so on the upside we avoided surgery, thank goodness. She chose a Baby Bop soft toy from the shop as a reward for her bravery. It put a smile back on her face. This incident just makes me want to get rid of the gastrostomy feeding tube forever. I hate having to watch her go through these procedures. I want so much for her to eat orally. But as I mentioned - she is about 9.4kg so hopefully we can try the Graz programme again soon.
It's been a good few weeks. I have managed to get better and stay well. 'Touch wood'. I am still receiving 3 tube feeds which are definately making me gain weight. I am sometimes hungry and sometimes just not interested at all. I get these ravenous moments and I just want to 'gorge' on big pieces of chicken or an entire packet of ham. The photos look like I am eating but what I do is chew and suck a bit and then spit - to Jack and Russel's delight.
It was my little sisters birthday - she turned one! We had a Teddy Bear's pizza picnic party. My Mom made a teddy cake and daddy made teddy faced pizza with everyone. I did try and eat some. We also jumped on a teddy jumping castle and smashed a teddy pinata. It was so much fun. I keep going to my mom now and saying: "Party Me! "Party Me! "Party Me!" I just love to party.
Mom's comment: We have been a bit slack at updating the site at the moment as we are focused on our core goal at the moment - getting her to gain weight. She is definately gaining and weighs about 9.4kg. We had a small incident of her feeding tube falling out without us knowing. You have 20 minutes before the hole starts to close and we only noticed it had fallen out about 1 to 1.5 hours after it had happened. I tried to put it back but she screamed in agony. I rushed her to her paediatrician and he gave it a good go. I did not look but just held her hands as tightly as I could. She screamed and screamed but was so incredibly brave. Imagine having a tube pushed through a closed wound. Eina! The doctor managed to get it back in - so on the upside we avoided surgery, thank goodness. She chose a Baby Bop soft toy from the shop as a reward for her bravery. It put a smile back on her face. This incident just makes me want to get rid of the gastrostomy feeding tube forever. I hate having to watch her go through these procedures. I want so much for her to eat orally. But as I mentioned - she is about 9.4kg so hopefully we can try the Graz programme again soon.
WEEK24-25 : Friday 25 April - Thursday 6 May 2010
Nothing too exciting to write about on the food front except to tell you that I am still really trying. When I gag, my mom ignores me and I sort myself out. We had Berlynn's birthday ring at school. It was so nice to be a part of all the other kids. We had a photo taken of us - the family (see below - me, dad, mom, Jada and Berlynn). I sat in the circle and helped Berlynn light her candles. And then we handed out ginger bread men. Maybe I will go to school sometime soon. My mom is visiting playschools in the area at the moment. Jenny (my special speech therapist) gave me a little cup to try and drink out of. It has a smaller circumference (wow that's a big word!) so it helps with my lip closure so a bit more goes down my throat and less comes out my mouth. I quite like it but I still like to try every other cup in the house. Still top of my list is chicken. Barney takes a close second. Dad and I share fish cake sometimes and he shows me how he bites a small piece and then chews it and then swallows. I watch closely and hope that I too can do that someday. I may not get my food down but I still get spinach teeth - check out my photos.
Nothing too exciting to write about on the food front except to tell you that I am still really trying. When I gag, my mom ignores me and I sort myself out. We had Berlynn's birthday ring at school. It was so nice to be a part of all the other kids. We had a photo taken of us - the family (see below - me, dad, mom, Jada and Berlynn). I sat in the circle and helped Berlynn light her candles. And then we handed out ginger bread men. Maybe I will go to school sometime soon. My mom is visiting playschools in the area at the moment. Jenny (my special speech therapist) gave me a little cup to try and drink out of. It has a smaller circumference (wow that's a big word!) so it helps with my lip closure so a bit more goes down my throat and less comes out my mouth. I quite like it but I still like to try every other cup in the house. Still top of my list is chicken. Barney takes a close second. Dad and I share fish cake sometimes and he shows me how he bites a small piece and then chews it and then swallows. I watch closely and hope that I too can do that someday. I may not get my food down but I still get spinach teeth - check out my photos.
Mom's comment: I hope we still have some followers? Camden is doing so well. Her speech is coming along and she's getting taller. Her weight is going up slowly. But at least it's going up! She still tries so hard and shows so much interest in food - but still spitting most of it out. I have been losing a bit of sleep lately about starting the eating programme again. One of her brilliant therapists advised that rather than netcoach her from J'oburg again, actually take her to the clinic in Graz. She felt that the medical support would be better and they would be able to observe much more closely what she is doing physically and psycologically with her eating behaviour, and doing it with other families would help everyone emotionally. I am very keen to take her but would have to chat to our peadiatrician and get his support and logistically with 2 other children - how do I go about it. To be away from the other 2 for 3-6 weeks is a long time. My heart is kind of torn in half. How do I work this one out?
WEEK26+ : Friday 7 May...
I weigh 9.64kg!!!!! Awesome. I gained 240grams in a month - which for most normal kids is a little but for me, it's pretty damn good. We saw my paediatricain and he is very happy with my progress. My head has even grown - I must be getting cleverer. He even said I could go to school next year. Whoohoo! School will be cool!
As most people know - South Africa is hosting the soccer world cup so it's soccer fever everywhere. My mom got a soccer scarf and hat for mother's day - but I think they look better on me.
Mom's comment: It's been a good couple of weeks. Decisions have been made. WE ARE GOING TO TAKE CAMDEN TO THE CLINIC IN GRAZ! We are booked in for the 19 September 2010. Our paediatrician is very happy with us going - infact he's keen to join us. He has huge respect for the University Children's hospital and is intrigued by their success. It's a big year for us. In the meantime we will keep getting her as 'fat' as possible and before we know it, we will be in Graz. Now that we have a plan - It's just a roller coaster of emotions again. I constantly have her song going round and round in my head "What will tomorrow bring?" I lie awake at night wondering if she will come home eating and off the tube. Will she lose too much weight again. It's so scary. I just want to help her so much and don't want to fail her again. Time will tell.
I won't be updating the site too much before then as it's just getting too big but as soon as we start the programme in Graz, I will update it daily.
I weigh 9.64kg!!!!! Awesome. I gained 240grams in a month - which for most normal kids is a little but for me, it's pretty damn good. We saw my paediatricain and he is very happy with my progress. My head has even grown - I must be getting cleverer. He even said I could go to school next year. Whoohoo! School will be cool!
As most people know - South Africa is hosting the soccer world cup so it's soccer fever everywhere. My mom got a soccer scarf and hat for mother's day - but I think they look better on me.
Mom's comment: It's been a good couple of weeks. Decisions have been made. WE ARE GOING TO TAKE CAMDEN TO THE CLINIC IN GRAZ! We are booked in for the 19 September 2010. Our paediatrician is very happy with us going - infact he's keen to join us. He has huge respect for the University Children's hospital and is intrigued by their success. It's a big year for us. In the meantime we will keep getting her as 'fat' as possible and before we know it, we will be in Graz. Now that we have a plan - It's just a roller coaster of emotions again. I constantly have her song going round and round in my head "What will tomorrow bring?" I lie awake at night wondering if she will come home eating and off the tube. Will she lose too much weight again. It's so scary. I just want to help her so much and don't want to fail her again. Time will tell.
I won't be updating the site too much before then as it's just getting too big but as soon as we start the programme in Graz, I will update it daily.