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WEEK 14: Friday 19 February - Thursday 25 February 2010
Another very tough week. I got really sick. I am so pale, skinny, lethargic and I am coughing alot - and this is not good. I had to go to the hospital and my doctor checked me in as a day case so he could run some tests. I had physio on my chest so that I could cough up the phlem for testing, they took some blood, I had a chest x-ray and then my doctor said its time for another barium swallow to see if I was aspirating (that's when the stuff you drink and eat goes into your lungs because you don't swallow properly and hence don't protect your lungs). My mom went red in the face (this usually happens when she is stressed, angry or had a glass of red wine). She wasn't angry or having wine so it must have been the stress. As you all know, I only swallow small amounts of water and sometimes a bit of formula but now they want me to swallow barium? My mom was in the x-ray room with me - a bit tearful now and even rosier - and she had to give me the barium. First we tried it standing up but I just refused. Then they called 2 more radiograpers into the room to hold me down and my mom had to just syringe the stuff into my mouth. I really resisted but my mom kept saying "Come on cammie, show them you can swallow. Show them how clever you are. Close your mouth, like Jenny showed you! And swallow." And I swallowed. I think about three times by the end of it. The radiographer came to my mom and said that there was no aspiration. My mom burst into tears - she was so relieved. If I had aspirated, all oral feeding would have to stop immediately and I would be classified as unsafe to feed through my mouth. I did not have to stay overnight in the hospital but we just went home with a sack of medication and a follow up appointment in two days. I am getting better. I totally lost my appetite while I was sick but now that I am on the mend, I am ravenous. For breakfast I can chew on a whole chicken (still spitting most of it out). Gerry and Caroline would be impressed by the mess. And Jack and Russel are again just loving the hoovering. Infact our hoover broke - so thank goodness for them.
Mom's comment: Another very tough week. I have not seen Camden this sick for ages. The runny tummy scared the hell out of me. And she just looked so sick. The barium swallow was very stressful but the outcome of not aspirating was great. Her swallow, although still delayed, looks a bit stronger than before. Now that she is getting better, she is really giving food a go again. I am sure she swallowed some of Jada's pureed veges the other day. She is not drinking as much of her bottle as I would like - about 100ml a day. But we are still giving her 3-4 feeds through her tube at night while she sleeps so we can get her to gain weight. She has gained - 8.68kg! So we are heading in the right direction. I was driving in my car this week listening to my cd player and a song came on that I had not played since Camden was in NeoNatal ICU just after she was born. It's a song I would play to myself really loudly everyday when I drove to and back from visiting Camden in ICU and cry the entire way through it. It's a very strong instrumental piece and the lyrics are really short. They start like this: "Thinking about tomorrow, With the sunset in your eyes.." Well, when this started to play, I just started howling. The man in the car next to me just sped of really quickly. When I used to listen to this song, I would think what will tomorrow bring? Will Camden be okay or will she not. We still don't really know but she's doing well and right now, I am thinking about tomorrow and when she comes to my bedroom door in the morning and knocks and says "nuck! nuck! mummie! mummie!" I will just say thank you for another beautiful tomorrow and hope for many more.
Another very tough week. I got really sick. I am so pale, skinny, lethargic and I am coughing alot - and this is not good. I had to go to the hospital and my doctor checked me in as a day case so he could run some tests. I had physio on my chest so that I could cough up the phlem for testing, they took some blood, I had a chest x-ray and then my doctor said its time for another barium swallow to see if I was aspirating (that's when the stuff you drink and eat goes into your lungs because you don't swallow properly and hence don't protect your lungs). My mom went red in the face (this usually happens when she is stressed, angry or had a glass of red wine). She wasn't angry or having wine so it must have been the stress. As you all know, I only swallow small amounts of water and sometimes a bit of formula but now they want me to swallow barium? My mom was in the x-ray room with me - a bit tearful now and even rosier - and she had to give me the barium. First we tried it standing up but I just refused. Then they called 2 more radiograpers into the room to hold me down and my mom had to just syringe the stuff into my mouth. I really resisted but my mom kept saying "Come on cammie, show them you can swallow. Show them how clever you are. Close your mouth, like Jenny showed you! And swallow." And I swallowed. I think about three times by the end of it. The radiographer came to my mom and said that there was no aspiration. My mom burst into tears - she was so relieved. If I had aspirated, all oral feeding would have to stop immediately and I would be classified as unsafe to feed through my mouth. I did not have to stay overnight in the hospital but we just went home with a sack of medication and a follow up appointment in two days. I am getting better. I totally lost my appetite while I was sick but now that I am on the mend, I am ravenous. For breakfast I can chew on a whole chicken (still spitting most of it out). Gerry and Caroline would be impressed by the mess. And Jack and Russel are again just loving the hoovering. Infact our hoover broke - so thank goodness for them.
Mom's comment: Another very tough week. I have not seen Camden this sick for ages. The runny tummy scared the hell out of me. And she just looked so sick. The barium swallow was very stressful but the outcome of not aspirating was great. Her swallow, although still delayed, looks a bit stronger than before. Now that she is getting better, she is really giving food a go again. I am sure she swallowed some of Jada's pureed veges the other day. She is not drinking as much of her bottle as I would like - about 100ml a day. But we are still giving her 3-4 feeds through her tube at night while she sleeps so we can get her to gain weight. She has gained - 8.68kg! So we are heading in the right direction. I was driving in my car this week listening to my cd player and a song came on that I had not played since Camden was in NeoNatal ICU just after she was born. It's a song I would play to myself really loudly everyday when I drove to and back from visiting Camden in ICU and cry the entire way through it. It's a very strong instrumental piece and the lyrics are really short. They start like this: "Thinking about tomorrow, With the sunset in your eyes.." Well, when this started to play, I just started howling. The man in the car next to me just sped of really quickly. When I used to listen to this song, I would think what will tomorrow bring? Will Camden be okay or will she not. We still don't really know but she's doing well and right now, I am thinking about tomorrow and when she comes to my bedroom door in the morning and knocks and says "nuck! nuck! mummie! mummie!" I will just say thank you for another beautiful tomorrow and hope for many more.
WEEK 15 and 16:
Friday 26 February - Thursday 11 March 2010
We have been a bit slack at updating the website - sorry about this. My mom's been so busy doing 'life' - its very consuming. I am feeling much better. The antibiotics did their thing but gave me possibly the worst nappy rash ever. Ouch! It feels like I have biting ants in my pants at times. I have gained a bit of weight - 140grams - so I am about 8.8kg now. My paediatrician is happy with this and says my chest is sounding good. He is in no hurry to start the tube weaning programme again. He wants me to be weighing 10kg first. The professor in Austria however says we can start when I weigh 9kg. We may have to negotiate - maybe 9.5kg? I am still taking 3 tube feeds at night when I am sleeping (don't tell my mom I am telling you this as I am not supposed to know that I am being fed). Orally I am not taking a bottle at all in the day - I just say naah! I am still trying to eat some food. Chicken is definately my favourite this week. My mom thinks she saw some traces of chicken in my nappy, so small tiny bits are going down my oesophagus but most of it is going down my top, onto the floor and down Jack and Russels oesophagus. Berlynn had her 'Saving the animals' birthday party this weekend. A man bought some animals to show us - he had an owl, a bush baby called Gismo, a huge bullfrog, a meercat, a baby crocodile (that I touched) and a python that weighed 47kgs. It was alot of fun.
Mom's comment: It's has been hectic again. Jada (Camden's baby sister) got pneumonia so more antibiotics, nebulising and physio in the house. I went to a baby shower and I met a lady there who has had 4 Nissen Funoplication operations in her life so far. It was so interesting to chat to her. She explained what it is like to eat after having this operation: For the first 3 months it is incredibly sore to eat and you can only have very pureed foods. Thereafter, it gets a bit easier, however, she mentioned that certain foods just get stuck and won't go down. Foods like potato, bread and pasta - they cause alot of dicomfort, gagging and choking and she avoids these all together. She has to eat 5 small meals in a day. If she forgets to eat, it is sore to eat again as the valve gets lazy and does not want to work. She also gets stringy mucus that comes out her mouth (just like Camden). She felt for Camden as she said it can be so incredibly painful and uncomfortable at times - like the most severe heartburn imaginable. It sounds like hell to me. Perhaps Camden experiences some or all of these symptoms - she is just not able to verbalise them yet. It was great to be able to talk to an adult who has had a Nissen and to give us a better understanding of what she goes through. This may be adding to her difficulty eating?
There is still not too much change on her oral intake at the moment. She is just refusing a bottle completely now, unfortunately. She still has the desire to eat food. But most of what goes in her mouth just comes back out again. She asks for chicken alot. I emailed the professor and she says that because we are tube feeding her lots at night, she is just not hungry enough to swallow and that's why she is probably refusing her bottle. She wants me to send her another video of her eating so she can access her again. I think the professor is keen to start the weaning again quite soon. I don't think we ready emotionally to go through it again just yet mainly because Camden is still so skinny. We need her strong. But hopefully in the next month or two.
Friday 26 February - Thursday 11 March 2010
We have been a bit slack at updating the website - sorry about this. My mom's been so busy doing 'life' - its very consuming. I am feeling much better. The antibiotics did their thing but gave me possibly the worst nappy rash ever. Ouch! It feels like I have biting ants in my pants at times. I have gained a bit of weight - 140grams - so I am about 8.8kg now. My paediatrician is happy with this and says my chest is sounding good. He is in no hurry to start the tube weaning programme again. He wants me to be weighing 10kg first. The professor in Austria however says we can start when I weigh 9kg. We may have to negotiate - maybe 9.5kg? I am still taking 3 tube feeds at night when I am sleeping (don't tell my mom I am telling you this as I am not supposed to know that I am being fed). Orally I am not taking a bottle at all in the day - I just say naah! I am still trying to eat some food. Chicken is definately my favourite this week. My mom thinks she saw some traces of chicken in my nappy, so small tiny bits are going down my oesophagus but most of it is going down my top, onto the floor and down Jack and Russels oesophagus. Berlynn had her 'Saving the animals' birthday party this weekend. A man bought some animals to show us - he had an owl, a bush baby called Gismo, a huge bullfrog, a meercat, a baby crocodile (that I touched) and a python that weighed 47kgs. It was alot of fun.
Mom's comment: It's has been hectic again. Jada (Camden's baby sister) got pneumonia so more antibiotics, nebulising and physio in the house. I went to a baby shower and I met a lady there who has had 4 Nissen Funoplication operations in her life so far. It was so interesting to chat to her. She explained what it is like to eat after having this operation: For the first 3 months it is incredibly sore to eat and you can only have very pureed foods. Thereafter, it gets a bit easier, however, she mentioned that certain foods just get stuck and won't go down. Foods like potato, bread and pasta - they cause alot of dicomfort, gagging and choking and she avoids these all together. She has to eat 5 small meals in a day. If she forgets to eat, it is sore to eat again as the valve gets lazy and does not want to work. She also gets stringy mucus that comes out her mouth (just like Camden). She felt for Camden as she said it can be so incredibly painful and uncomfortable at times - like the most severe heartburn imaginable. It sounds like hell to me. Perhaps Camden experiences some or all of these symptoms - she is just not able to verbalise them yet. It was great to be able to talk to an adult who has had a Nissen and to give us a better understanding of what she goes through. This may be adding to her difficulty eating?
There is still not too much change on her oral intake at the moment. She is just refusing a bottle completely now, unfortunately. She still has the desire to eat food. But most of what goes in her mouth just comes back out again. She asks for chicken alot. I emailed the professor and she says that because we are tube feeding her lots at night, she is just not hungry enough to swallow and that's why she is probably refusing her bottle. She wants me to send her another video of her eating so she can access her again. I think the professor is keen to start the weaning again quite soon. I don't think we ready emotionally to go through it again just yet mainly because Camden is still so skinny. We need her strong. But hopefully in the next month or two.
WEEK17 : Friday 12 March - Thursday 18 March 2010
Hi again, to those of you who are still tracking my progress. It's a bit like watching paint dry at the moment but it means alot to me that you are all very patient and have not given up on me. Thank you! This week mom and dad went away to cycle The Argus in Cape Town. They left us with Gagga and Pappa, Monica and Flora, and Jacobeth ('The army' as my dad calls it). We had fun but by the end of the weekend, Gagga had nicknamed me 'The Terrorist' because I kept attacking my little sister, Jada. I don't mean to but I am bigger than her and I am just enforcing that. I missed my mom and my dad alot and was so happy when they came back. Big smiles and hugs and kisses. While they were away I kept trying to eat. Chew! Chew! Spit! Spit! The Professor tells my mom that I am spitting the food out because I am not hungry enough yet to swallow it. Often when the food does go to the back of my throat, I really gagg and it's pretty uncomfortable? My mom keeps telling me that if I learn to eat I may be able to go to school next year. That would be so nice. I love other children. Infact I am a bit of a socialite (Dad's gene definately). When I meet other kids I automatically hold their hand or hug them. Some get a fright and run far away but some don't mind and hug back.
Mom's comment: It was good to have a break from everything. Definately what the doctor ordered for me and Lance. We were a bit nervous about going away but with the army of helpers there it was okay. We totally relaxed and cycled 110km in some very strong wind. Cycling 110km is so much easier than many things we have had to tackle in the last couple of years. It was great to partake. Camden is making progress in the tiniest of ways even though the 3 tube feeds are still going in at night. The greatest thing is that she has not lost the desire or the determination. She is also slowly gaining weight again. Her clothes are starting to fit her again instead of just slipping off. The Professor is itching to get going again with weaning her off her tube feeds but as I have mentioned above, Camden's peadiatrician is in no rush. It is so nice to see that she is still trying and trying. She is a walking example of the Barney song; 'If you don't get it the first time, try a second time and if you don't get it the second time, try and try and try again..." She doesn't give up. She is amazing and she is happy. The photo above is her giving you a little wink.
Hi again, to those of you who are still tracking my progress. It's a bit like watching paint dry at the moment but it means alot to me that you are all very patient and have not given up on me. Thank you! This week mom and dad went away to cycle The Argus in Cape Town. They left us with Gagga and Pappa, Monica and Flora, and Jacobeth ('The army' as my dad calls it). We had fun but by the end of the weekend, Gagga had nicknamed me 'The Terrorist' because I kept attacking my little sister, Jada. I don't mean to but I am bigger than her and I am just enforcing that. I missed my mom and my dad alot and was so happy when they came back. Big smiles and hugs and kisses. While they were away I kept trying to eat. Chew! Chew! Spit! Spit! The Professor tells my mom that I am spitting the food out because I am not hungry enough yet to swallow it. Often when the food does go to the back of my throat, I really gagg and it's pretty uncomfortable? My mom keeps telling me that if I learn to eat I may be able to go to school next year. That would be so nice. I love other children. Infact I am a bit of a socialite (Dad's gene definately). When I meet other kids I automatically hold their hand or hug them. Some get a fright and run far away but some don't mind and hug back.
Mom's comment: It was good to have a break from everything. Definately what the doctor ordered for me and Lance. We were a bit nervous about going away but with the army of helpers there it was okay. We totally relaxed and cycled 110km in some very strong wind. Cycling 110km is so much easier than many things we have had to tackle in the last couple of years. It was great to partake. Camden is making progress in the tiniest of ways even though the 3 tube feeds are still going in at night. The greatest thing is that she has not lost the desire or the determination. She is also slowly gaining weight again. Her clothes are starting to fit her again instead of just slipping off. The Professor is itching to get going again with weaning her off her tube feeds but as I have mentioned above, Camden's peadiatrician is in no rush. It is so nice to see that she is still trying and trying. She is a walking example of the Barney song; 'If you don't get it the first time, try a second time and if you don't get it the second time, try and try and try again..." She doesn't give up. She is amazing and she is happy. The photo above is her giving you a little wink.
WEEK18 : Friday 19 March - Thursday 25 March 2010
I got my first helmet this week and we went for a ride on a big bike. My daddy does the hard work in the front while I get to enjoy the view from the back. "This is the life."
I had a good chew on some chicken before we left but then insisted on bringing my chicken leg along. I chewed the entire ride and left some greasy fingerprints on my dad's back and a trail down the road and through the park. I love cycling. Maybe I will ride the Argus like my parents, some day. I also did really well on ice cream this week. I gave it a few good licks and usually I stop after the first lick because of the extreme cold taste but I seem to be warming up to it and licked it a few times. I also sucked on a lollipop in speech therapy. I put the entire thing in my mouth (this is a first) and sucked and swallowed. Woohoo! And then did it again. Woohoo! Not too bad hey! I am also quite liking coffee but only strong expresso coffee. Some moms who are reading this might say my mom is crazy! how can she give me coffee! Well, I swallow small sips of it and every sip of anything that I swallow is helping me get better. But don't give me instant coffee. I won't swallow that.
If I was able to draw up a list of a few of my favourite things right now, this would be it:
Chicken
Barney
Making pizza with dad
Expresso
Chicken
Chicken
Barney
Chicken
I got my first helmet this week and we went for a ride on a big bike. My daddy does the hard work in the front while I get to enjoy the view from the back. "This is the life."
I had a good chew on some chicken before we left but then insisted on bringing my chicken leg along. I chewed the entire ride and left some greasy fingerprints on my dad's back and a trail down the road and through the park. I love cycling. Maybe I will ride the Argus like my parents, some day. I also did really well on ice cream this week. I gave it a few good licks and usually I stop after the first lick because of the extreme cold taste but I seem to be warming up to it and licked it a few times. I also sucked on a lollipop in speech therapy. I put the entire thing in my mouth (this is a first) and sucked and swallowed. Woohoo! And then did it again. Woohoo! Not too bad hey! I am also quite liking coffee but only strong expresso coffee. Some moms who are reading this might say my mom is crazy! how can she give me coffee! Well, I swallow small sips of it and every sip of anything that I swallow is helping me get better. But don't give me instant coffee. I won't swallow that.
If I was able to draw up a list of a few of my favourite things right now, this would be it:
Chicken
Barney
Making pizza with dad
Expresso
Chicken
Chicken
Barney
Chicken
Mom's comment: Not a bad week considering that she is not hungry enough to swallow. She is giving it a go and things like licking cold ice cream and sucking a lollipop are just incredible little steps forward. She does seem to like coffee. I give her tiny amounts from my cup. I think she enjoys its strong flavour and the knowing that this is not really a kiddy drink. She gets a very naughty, satisfied expression on her face. It's hilarious.