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DAY 48/49: Wednesday/Thursday 7/8 January 2010
Back home and still drinking my bottle but not as much as I was having towards the end of my holiday. We went out to a little very authentic pizza place in town with Andrew today for lunch and I had a taste of the home made bread which was nice. I also had salad and I just love tomatoes, especially cherry tomatoes. (Charlie and Lola would be proud.) I suck and suck them and then spit the rest out. I also tried some chicken sausage today and to Jack and Russie's delight, I left a trail around the house, which they promptly cleaned up. Jack seems to have put on a bit of weight these days - mmm I wonder why? I tried some baked fish for dinner but battled as I seemed to choke easily on it so my mom unfortunately had to give me a few hard bangs on my back to get the stuck pieces out. But I am okay and right now 19h00 I am fast asleep.
Mom's comment: I constantly have her bottle of formula nearby so that whenever she asks me for it, i give it to her. She is a bit down on her intake but maybe it's because she is not as active as she was on holiday and also not in the sun. It is so great though to be able to give her a bottle like a 'normal' child and the pressure of the programme has definately eased up even though she has not yet made the transition to solids yet. It is very special to see her take in something through her mouth and to watch her enjoy it - something we have never been able to do. I am getting nervous for next week - if we do drop the last tube feed. We will have to watch her weight closely as she still weighs 8.6kg, so she has not yet gained any weight since she lost it. When she choked on the fish tonight, she battled to clear it and went a bit blue and pale so I had to intervene. Once it had come out, she was back for more. It's amazing. She just does not give up!
DAY 50/51/52: Friday/Saturday/Sunday 9/10/11 January 2010
It was a good weekend. My dad was still on leave so he was around on Friday and it's always so cool to have him around. I am still drinking my bottle - it works out to about 2 - 2.5 a day. I quite like this bottle drinking thing and sitting on my mom's lap while doing it. I love ham and went through an entire packet this weekend. Fish cakes are also rad. I am still spitting most of my food out but am trying to chew it first. We caught Russel on the kitchen counter tonight, cleaning up the fish cake left overs. He is so naughty!
Mom's comment: Although the pressure has slightly eased because she is taking in something orally (which is just amazing), she is still so skinny. She fits into Jada's clothes and most of her clothes just fall of her. So it's still a bit worrying. I emailed the professor tonight so am waiting to hear if she thinks we must drop her last tube feed? This programme truelly is amazing so far, as hard as it is to go through. The fact that Camden is taking a bottle (Sucking! Swallowing! Things we were told that she may never do!) is the proof and if there are any families out there reading this who are thinking about doing the programme, don't think, just go for it. If you don't try, you will never know. And if it does help, you will never look back. We have climbed a huge mountain and it's pretty good up here.
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DAY 53/54/55: Monday/Tuesday/Wednesday 12/13/14 January 2010
My tube feeds have been cut completely since last night. NO TUBE FEEDS!
Imagine that! I drank 3 bottles today. I woke at 4am and asked for some of my bottle - like 'normal baby' stuff. Wow! Quite cool hey.
Mom's comment: One of the moments we have always dreamed of is here! No more tube feeding! No tubes, no syringes, no feeding when she is fast asleep. This is all we have really known with Camden. Wow! I am feeling pretty happy right now and blessed to have such a determined, clever little daughter. I am also a bit scared. We still have the peg (the place where you attach the tube) in place and it will remain there until we are certain she can sustain herself orally. It is also still in place so that I can medicate her as all her meds will have to be put in through the peg for now as she would not take these orally yet. I have taken all thing related to tube feeding and packed them out of Camden's site in the hope that she will start to disassociate feeding with her peg. She is still hungry for food yet battling to swallow it. She chokes quite a lot. The professor on this note just says keep going and make sure food is available to her 24/7. She weighs 8.5kg.
DAY 56: Thursday 14 January 2010
I am doing okay with no tube feeds. Today I drank about 2.5 bottles of formula in 24 hours. I woke at 1am and wanted some of my bottle. When it comes to food - boy oh boy do I want to eat. I am desperate to. I am just battling with the how? Every night Berlynn, Jada and me sit at the family room table and have dinner together. It's pretty cool. Jack and Russel sit under the table waiting anxiously for bits to drop on the floor. Today I said clearly "Berlynn, we are waiting for you." My mom nearly fell off her chair. It was also nice to see Jenny today (my speech therapist). I showed her how I drink my bottle and she was very happy with my lip closure and sucking. I also showed her how much I love ham and chicken sausages by stuffing them all in my mouth and then leaving a food trail around her office.
Mom's comment: So far so good. She is just so thin. When I hold her I can feel her bum bones. Please please can she just start gaining a bit. Her speech is definately improving and sometimes when she wants something she thinks and tries so hard to find the word. She really is developing. Jenny (speech therapist), after seeing Camden put an entire pice of ham and a whole chicken sausage into her mouth, feels that we should try and offer her food that is broken into tiny pieces to see if she can perhaps handle the smaller bits better and hopefully swallow them. So we will give it a try.
Back home and still drinking my bottle but not as much as I was having towards the end of my holiday. We went out to a little very authentic pizza place in town with Andrew today for lunch and I had a taste of the home made bread which was nice. I also had salad and I just love tomatoes, especially cherry tomatoes. (Charlie and Lola would be proud.) I suck and suck them and then spit the rest out. I also tried some chicken sausage today and to Jack and Russie's delight, I left a trail around the house, which they promptly cleaned up. Jack seems to have put on a bit of weight these days - mmm I wonder why? I tried some baked fish for dinner but battled as I seemed to choke easily on it so my mom unfortunately had to give me a few hard bangs on my back to get the stuck pieces out. But I am okay and right now 19h00 I am fast asleep.
Mom's comment: I constantly have her bottle of formula nearby so that whenever she asks me for it, i give it to her. She is a bit down on her intake but maybe it's because she is not as active as she was on holiday and also not in the sun. It is so great though to be able to give her a bottle like a 'normal' child and the pressure of the programme has definately eased up even though she has not yet made the transition to solids yet. It is very special to see her take in something through her mouth and to watch her enjoy it - something we have never been able to do. I am getting nervous for next week - if we do drop the last tube feed. We will have to watch her weight closely as she still weighs 8.6kg, so she has not yet gained any weight since she lost it. When she choked on the fish tonight, she battled to clear it and went a bit blue and pale so I had to intervene. Once it had come out, she was back for more. It's amazing. She just does not give up!
DAY 50/51/52: Friday/Saturday/Sunday 9/10/11 January 2010
It was a good weekend. My dad was still on leave so he was around on Friday and it's always so cool to have him around. I am still drinking my bottle - it works out to about 2 - 2.5 a day. I quite like this bottle drinking thing and sitting on my mom's lap while doing it. I love ham and went through an entire packet this weekend. Fish cakes are also rad. I am still spitting most of my food out but am trying to chew it first. We caught Russel on the kitchen counter tonight, cleaning up the fish cake left overs. He is so naughty!
Mom's comment: Although the pressure has slightly eased because she is taking in something orally (which is just amazing), she is still so skinny. She fits into Jada's clothes and most of her clothes just fall of her. So it's still a bit worrying. I emailed the professor tonight so am waiting to hear if she thinks we must drop her last tube feed? This programme truelly is amazing so far, as hard as it is to go through. The fact that Camden is taking a bottle (Sucking! Swallowing! Things we were told that she may never do!) is the proof and if there are any families out there reading this who are thinking about doing the programme, don't think, just go for it. If you don't try, you will never know. And if it does help, you will never look back. We have climbed a huge mountain and it's pretty good up here.
***********************************************************************************
DAY 53/54/55: Monday/Tuesday/Wednesday 12/13/14 January 2010
My tube feeds have been cut completely since last night. NO TUBE FEEDS!
Imagine that! I drank 3 bottles today. I woke at 4am and asked for some of my bottle - like 'normal baby' stuff. Wow! Quite cool hey.
Mom's comment: One of the moments we have always dreamed of is here! No more tube feeding! No tubes, no syringes, no feeding when she is fast asleep. This is all we have really known with Camden. Wow! I am feeling pretty happy right now and blessed to have such a determined, clever little daughter. I am also a bit scared. We still have the peg (the place where you attach the tube) in place and it will remain there until we are certain she can sustain herself orally. It is also still in place so that I can medicate her as all her meds will have to be put in through the peg for now as she would not take these orally yet. I have taken all thing related to tube feeding and packed them out of Camden's site in the hope that she will start to disassociate feeding with her peg. She is still hungry for food yet battling to swallow it. She chokes quite a lot. The professor on this note just says keep going and make sure food is available to her 24/7. She weighs 8.5kg.
DAY 56: Thursday 14 January 2010
I am doing okay with no tube feeds. Today I drank about 2.5 bottles of formula in 24 hours. I woke at 1am and wanted some of my bottle. When it comes to food - boy oh boy do I want to eat. I am desperate to. I am just battling with the how? Every night Berlynn, Jada and me sit at the family room table and have dinner together. It's pretty cool. Jack and Russel sit under the table waiting anxiously for bits to drop on the floor. Today I said clearly "Berlynn, we are waiting for you." My mom nearly fell off her chair. It was also nice to see Jenny today (my speech therapist). I showed her how I drink my bottle and she was very happy with my lip closure and sucking. I also showed her how much I love ham and chicken sausages by stuffing them all in my mouth and then leaving a food trail around her office.
Mom's comment: So far so good. She is just so thin. When I hold her I can feel her bum bones. Please please can she just start gaining a bit. Her speech is definately improving and sometimes when she wants something she thinks and tries so hard to find the word. She really is developing. Jenny (speech therapist), after seeing Camden put an entire pice of ham and a whole chicken sausage into her mouth, feels that we should try and offer her food that is broken into tiny pieces to see if she can perhaps handle the smaller bits better and hopefully swallow them. So we will give it a try.
DAY 57: Friday 15 January 2010
Today I drank 3 and a bit bottles. Pretty impressive hey. I tried all sorts of food today: fish paste on toast, mom's muesli, ham, chicken, sausages, pasta with a fish sauce, chickpeas, nik naks, fish cakes, gem squash, mielie. But I chew and spit most of the time. A new childminder started today as Nellie is going on maternity leave. She seems very nice but I am going to miss Nellie.
Mom's comment: She did really well on her bottle today. It was like she was just constantly asking for her bottle all day. She seems to me to have lost a bit more weight but she is still so full of beans and happy most of the time? She still loves trying to eat and is constantly pulling me to the fridge and tells me to open it so she can have a look what she can try. I cut the food into smaller pieces today but she just takes more pieces and stuffs them into her mouth. But I will keep trying. We are busy preparing for her party and she seems really excited. Every now and again she shouts out "BIIRRTTHHDDAAYYY."
DAY 58: Saturday 16 January 2010
Today my dad took me and Jada to his high school reunion family picnic. My mom was out shopping for my birthday party tomorrow. There was lots of boerewors at the braai and I chewed on alot of it. I loved it. In the night (as per most Saturday nights) we made pizza. I made two little ones and they were yum. I even gave some to Jada - she loved it!
Mom's comment: When she returned from the high school reunion family picnic, she was really happy and smelled a bit like a boerewors roll. She is still just chewing the food and then and spitting it out. I fetched her birthday cake today - 'Ba Ba Black Sheep' - very cute. We put up her party decorations for tomorrow and had great fun with her blowing up balloons. She drank just over 3 bottles of formula today. And was so proud of her two little pizza's.
Today I drank 3 and a bit bottles. Pretty impressive hey. I tried all sorts of food today: fish paste on toast, mom's muesli, ham, chicken, sausages, pasta with a fish sauce, chickpeas, nik naks, fish cakes, gem squash, mielie. But I chew and spit most of the time. A new childminder started today as Nellie is going on maternity leave. She seems very nice but I am going to miss Nellie.
Mom's comment: She did really well on her bottle today. It was like she was just constantly asking for her bottle all day. She seems to me to have lost a bit more weight but she is still so full of beans and happy most of the time? She still loves trying to eat and is constantly pulling me to the fridge and tells me to open it so she can have a look what she can try. I cut the food into smaller pieces today but she just takes more pieces and stuffs them into her mouth. But I will keep trying. We are busy preparing for her party and she seems really excited. Every now and again she shouts out "BIIRRTTHHDDAAYYY."
DAY 58: Saturday 16 January 2010
Today my dad took me and Jada to his high school reunion family picnic. My mom was out shopping for my birthday party tomorrow. There was lots of boerewors at the braai and I chewed on alot of it. I loved it. In the night (as per most Saturday nights) we made pizza. I made two little ones and they were yum. I even gave some to Jada - she loved it!
Mom's comment: When she returned from the high school reunion family picnic, she was really happy and smelled a bit like a boerewors roll. She is still just chewing the food and then and spitting it out. I fetched her birthday cake today - 'Ba Ba Black Sheep' - very cute. We put up her party decorations for tomorrow and had great fun with her blowing up balloons. She drank just over 3 bottles of formula today. And was so proud of her two little pizza's.
DAY 59: Sunday 17 January 2010
My Birthday! And my Nursery Rhyme Party!
Hey diddle diddle.
With a laugh and a giggle,
Camden is turning two!
Mom and Dad laugh and shout with joy.
And Jack and Russel run away
with the spoon.
My mom painted the letters of my name in the Nursery Rhyme theme for decoration and she made a Humpty Dumpty pinata and some Incy Wincy spider hats. I had a Ba Ba Black Sheep cake and I had a carousel with ducks horses and a car and there was a face painter. Lots of friends came and sang Happy Birthday to me. I tasted lots of ham, drank lots of my bottle but was not too keen on the sweets and cake. I got so many beautiful presents. What fun!
Mom's comment: What a special day for us! She may not have eaten some cake but she is still sucking her bottle like a little champion. It was a very emotional day for us but such a happy occasion. She has just done so well and to be able to celebrate her second birthday, is momentous. She kept asking for ham during the party and was not too interested in the sweets. She loved the carousel and definately loved the little car the most, leaving a trail of ham all over it. We tried painting her face but her excitement did not allow her to sit still for longer than 2 seconds. Berlynn had her face painted like one of the cats who lost her mittens and Jada wore an incy hat.
"Happy Birthday to my very special girl. This year I will keep holding you tight and climb whatever more mountains we need to together. I love it when you smile. When you laugh and when you have fun. May your year be filled with this!"
"Happy Birthday to my very special girl. This year I will keep holding you tight and climb whatever more mountains we need to together. I love it when you smile. When you laugh and when you have fun. May your year be filled with this!"
DAY 60/61/62/63: Monday 18 - Thursday 21 January 2010
I am two now and feeling pretty good. I am happy and as cheeky as ever. The last few days I have slightly increased the amount of bottles that I am drinking. So I am on about 3 to 3.5 a day. I saw my dietician and she has added some more calories to each of my bottles in the hope that I start to gain weight now. My peadiatrician is very concerned though. He says my head is not growing and I am very skinny. He used a word 'marasmus' to describe me. That's a bit beyond mine and my mom's diction so my mom went home and looked up the meaning. (marasmus n. A progressive wasting of the body, occurring chiefly in young children and associated with insufficient intake or malabsorbtion of food.) He did feel that I was quite sharp though (I remembered where the sweet jar was from the last time I was there - he was impressed so I scored 2 fizzers and 2 suckers.) I kept looking for Barney during my appointment with him but there was no purple dinosaur! He promised me he would go out an buy one so that he would be there for my next appointment. That will be cool. He did say I am gorgeous and very cute.
Mom's comment: Dr Richard does have concerns so I have emailed the professor with these. He would like us to give her some night tube feeds again so that we can get her growing again. He feels we must not rush things as she has shown us that she has the potential and given time she will get it anyway. If we do give her too many night feeds she will then just start to drink less orally in day? So we have to be careful so as not to go backwards. I spoke to her dietician and we thought what we should try is whatever formula she does not take orally of her recommended calories in 24 hour period, I will put the balance into her peg at night. Hopefully this will help her to start gaining weight again.
The problem with resuming tube feeds is that it works against the programme. If she feels full (which she will as you are putting food into her) she will want to take and explore less and less orally.
I am two now and feeling pretty good. I am happy and as cheeky as ever. The last few days I have slightly increased the amount of bottles that I am drinking. So I am on about 3 to 3.5 a day. I saw my dietician and she has added some more calories to each of my bottles in the hope that I start to gain weight now. My peadiatrician is very concerned though. He says my head is not growing and I am very skinny. He used a word 'marasmus' to describe me. That's a bit beyond mine and my mom's diction so my mom went home and looked up the meaning. (marasmus n. A progressive wasting of the body, occurring chiefly in young children and associated with insufficient intake or malabsorbtion of food.) He did feel that I was quite sharp though (I remembered where the sweet jar was from the last time I was there - he was impressed so I scored 2 fizzers and 2 suckers.) I kept looking for Barney during my appointment with him but there was no purple dinosaur! He promised me he would go out an buy one so that he would be there for my next appointment. That will be cool. He did say I am gorgeous and very cute.
Mom's comment: Dr Richard does have concerns so I have emailed the professor with these. He would like us to give her some night tube feeds again so that we can get her growing again. He feels we must not rush things as she has shown us that she has the potential and given time she will get it anyway. If we do give her too many night feeds she will then just start to drink less orally in day? So we have to be careful so as not to go backwards. I spoke to her dietician and we thought what we should try is whatever formula she does not take orally of her recommended calories in 24 hour period, I will put the balance into her peg at night. Hopefully this will help her to start gaining weight again.
The problem with resuming tube feeds is that it works against the programme. If she feels full (which she will as you are putting food into her) she will want to take and explore less and less orally.