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DAY 35/36: Thursday/Friday 24/25 December 2009
All I want for Christmas is to be able to eat. Please!
My dad dressed up as Father Christmas but I didn't like his beard too much. Berlynn just screamed at the site of him. My mom bought us all the same dresses and we made our favourite family meal together - PIZZA! with our good friends Andrew and Lisa.
Mom's comment: Christmas is here and I can't believe we are on week 6 already. But we do know that it is going to take a very long time for Camden to eat and we hope that the next Christmas or the next or even the next, her Christmas wish may come true. It is all I wish for too. She tried all the things on that were on offer - pizza, turkey, panettone, wine (just kidding). She sucks and sucks and chews a bit and sucks and then spits. She is still asking for a bottle, which is brilliant and her lip closure around the teat has definately improved. We estimate that she swalows about 50% of what she drinks. She only sits and tries for short periods so she takes very small amounts throughout the day. She is still clingy but laughs and smiles and is still her very social self when she sees other children. Infact she chased a little boy around the restaurant we had lunch at on the 24th.
All I want for Christmas is to be able to eat. Please!
My dad dressed up as Father Christmas but I didn't like his beard too much. Berlynn just screamed at the site of him. My mom bought us all the same dresses and we made our favourite family meal together - PIZZA! with our good friends Andrew and Lisa.
Mom's comment: Christmas is here and I can't believe we are on week 6 already. But we do know that it is going to take a very long time for Camden to eat and we hope that the next Christmas or the next or even the next, her Christmas wish may come true. It is all I wish for too. She tried all the things on that were on offer - pizza, turkey, panettone, wine (just kidding). She sucks and sucks and chews a bit and sucks and then spits. She is still asking for a bottle, which is brilliant and her lip closure around the teat has definately improved. We estimate that she swalows about 50% of what she drinks. She only sits and tries for short periods so she takes very small amounts throughout the day. She is still clingy but laughs and smiles and is still her very social self when she sees other children. Infact she chased a little boy around the restaurant we had lunch at on the 24th.
DAY 37-47: Saturday 26 December - Wednesday 6 January 2010
So we popped home for 2 sleeps after a great Christmas at Westbrooke Beach on the Natal North Coast and then we went in an aeroplane! It was such fun. Never been in one before. We arrived at a town called George and then drove to Springerbaai - to spend some time with our very special friends who recently moved to London at their fun beach house.
When we arrived my mom quickly explained my eating programme to our friends - as I make alot of mess when I eat as you all know so she wanted to warn them. My mom promised we would manage the mess but Gerry and Caroline were not too fussed. They were just happy to be a part of my messy programme. There were lots of children Jada (8mths), me (23mths), Ammelia (3yrs), Berlynn (4yrs) and Phoebe (5yrs). So it was pretty crazy especially for the grown ups. Meal times were fun as we all sat together and I made sure that Caroline never left me out of anything especially the biltong, salami, bolognaise, boerewors and ham. My eating is still as messy as ever. I stuff so much into my mouth, chew it and spit most of it out. So you can imagine what the floor looks like. I wear a catch bib and that gets really full. I love trying to eat. I really enjoy the tasting and being able to take part in a meal with the all the girls. It makes me happy. I have improved on my bottle drinking. Each day I got a bit better and my sucking has improved so I spill hardly anything now. My mom and dad are so happy. They were able to drop one of my night tube feeds so I only get one tube feed now! Wow! I am so proud. I now take about 3 bottles of formula through my mouth daily and I am actually really enjoying it. It's also nice as I get to sit cosily in my mom's lap and drink - something I have never previously been able to do. I love the beach and it was so sad to have to say goodbye to it. I shouted out to it: "Bye bye sea! Bye bye sea!" In the car on the way to the airport to come home we sang Caroline's song: "Bye bye Springerbaai. We had such fun but it's time to fly." I was sad to leave. I am back home now and got such a big hug from Nellie and Monica (our nannies) when I walked in and some licks from Jack and Russel. It's good to be home.
Mom's comment: Camden is doing really well. Her bottle drinking has really come a long way. It has been an incredible experience. The professor in Graz is very happy with her progress and would like to stop all tube feeds by Monday 11 January!!!!! No tube feeds. Wow - I never thought we would get to this point so soon. It brings tears to our eyes. She has also asked us to hide all things to do with tube feeding ie syringes, tubes, spare mickeys etc from her site so that mentally she can start to no longer associate feeding with a tube, which makes complete sense. She still tries to eat everything and puts way to much food into her mouth at a time. The Prof says we should just let her do what she wants and should not interfere as at this point we are trying to develop her confidence with eating and interference from us may take this away. The holiday was brilliant for her and could not have come at a better time. I want to thank a very special family "the Humans"for being so supportive, so understanding, so helpful and for giving her the hoiliday of a lifetime. Being with you guys really pushed her that bit further. She misses you, the sea and the tortoises already. I am now off to buy her ham, mince, sausages and biltong!
So we popped home for 2 sleeps after a great Christmas at Westbrooke Beach on the Natal North Coast and then we went in an aeroplane! It was such fun. Never been in one before. We arrived at a town called George and then drove to Springerbaai - to spend some time with our very special friends who recently moved to London at their fun beach house.
When we arrived my mom quickly explained my eating programme to our friends - as I make alot of mess when I eat as you all know so she wanted to warn them. My mom promised we would manage the mess but Gerry and Caroline were not too fussed. They were just happy to be a part of my messy programme. There were lots of children Jada (8mths), me (23mths), Ammelia (3yrs), Berlynn (4yrs) and Phoebe (5yrs). So it was pretty crazy especially for the grown ups. Meal times were fun as we all sat together and I made sure that Caroline never left me out of anything especially the biltong, salami, bolognaise, boerewors and ham. My eating is still as messy as ever. I stuff so much into my mouth, chew it and spit most of it out. So you can imagine what the floor looks like. I wear a catch bib and that gets really full. I love trying to eat. I really enjoy the tasting and being able to take part in a meal with the all the girls. It makes me happy. I have improved on my bottle drinking. Each day I got a bit better and my sucking has improved so I spill hardly anything now. My mom and dad are so happy. They were able to drop one of my night tube feeds so I only get one tube feed now! Wow! I am so proud. I now take about 3 bottles of formula through my mouth daily and I am actually really enjoying it. It's also nice as I get to sit cosily in my mom's lap and drink - something I have never previously been able to do. I love the beach and it was so sad to have to say goodbye to it. I shouted out to it: "Bye bye sea! Bye bye sea!" In the car on the way to the airport to come home we sang Caroline's song: "Bye bye Springerbaai. We had such fun but it's time to fly." I was sad to leave. I am back home now and got such a big hug from Nellie and Monica (our nannies) when I walked in and some licks from Jack and Russel. It's good to be home.
Mom's comment: Camden is doing really well. Her bottle drinking has really come a long way. It has been an incredible experience. The professor in Graz is very happy with her progress and would like to stop all tube feeds by Monday 11 January!!!!! No tube feeds. Wow - I never thought we would get to this point so soon. It brings tears to our eyes. She has also asked us to hide all things to do with tube feeding ie syringes, tubes, spare mickeys etc from her site so that mentally she can start to no longer associate feeding with a tube, which makes complete sense. She still tries to eat everything and puts way to much food into her mouth at a time. The Prof says we should just let her do what she wants and should not interfere as at this point we are trying to develop her confidence with eating and interference from us may take this away. The holiday was brilliant for her and could not have come at a better time. I want to thank a very special family "the Humans"for being so supportive, so understanding, so helpful and for giving her the hoiliday of a lifetime. Being with you guys really pushed her that bit further. She misses you, the sea and the tortoises already. I am now off to buy her ham, mince, sausages and biltong!