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'No one can know what he can do until he tries' unknown
WEEK 10: Friday 22 - Thursday 28 January 2010
I am not really drinking as much of my bottle as I was last week and the week before. But I think that's definately because they are giving me some feeds while I sleep at night through my tube (I am not supposed to know this so ssshhh!). I think they are trying to make me put on a bit of weight. The professor says I have lost far below the average. You are only meant to loose 10% of your body fat - I have lost about 20%. On a bad day I am taking in about 1 and a half bottles and on a good day about 2 and a half. I still love sitting in my mom's lap when I have my bottle. My mom puts food out all day for me to have a taste. But now the ants have decided to have a taste too. If I drop a piece of food, they are there in about 5 minutes. Amazing creatures! Berlynn gets very upset if anyone tries to hurt them. She is what her teachers call an 'earth child' with a particular interest in saving animals. I insisted on feeding Jada the other night. We did her comes a chooka train beep beep open the tunnel. It was great fun. I missed her moth alot but she was okay with pureed vege chicken hair, ears, nose and neck.
Mom's comment: We have had to start two tube feeds again at night - she is just too thin. We started quite slowly as we found that going back to the tube feeding caused severe gagging and retching about half an hour after feeding her. Her tummy has definately shrunk and the large volume (150ml at a time) is just too much and causes what we think is a gas bloat. Unfortunately, because Camden had an operation on her tummy when she was 2 weeks old (nissan fundoplication) she cannot burp or vomit so she can't get the air out or anything for that matter so she gaggs and retches. It is pretty awful when it happens. It does not last that long but she is very uncomfortable for a while thereafter. I got together with some other mom's who have tube fed children the other day. Some have been to the Graz clinic and some are on their way. It was great to be able to share similar emotions and experiences and to just be with other women who know what it's like to have a 'special needs' child. I salute many of these women as they have been through alot more than me and wow, they are strong and so inspiring. It was also so great to see one of the mom's who just got back so happy. Her little sweetheart, Gideon is off his nasogastro tube and eating orally (heaps of custard). I am happy that Camden is still taking her bottle. It is all helping to exercise her swallowing muscles and coordination. Her swallow too has become less laboured and forced and seems a bit more spontaneous. So we will just keep going.
WEEK 11: Friday 29 January - Thursday 4 February
This week was okay. I think I have gained a bit of weight so hopefully when I see my doctor on Friday he will be happy (and have bought the Barney he promised?) I am not drinking too many bottles at the moment - one to one and a half in the day. My mom constantly encourages me but I don't know - I just don't want that much. I am sleeping really well - which makes for a change. Most nights I have slept through and I am not gagging so much - thank goodness! I have also discovered 'words' and am trying so so hard to say them. Often I get a big person just looking at me with a confused look on their face, trying to figure out what I am saying but when they work it out - I am so happy and so proud. I am still giving little Jada a hard time. I like to just lie on her and pinch her a bit. I am older than her you know! And I am making sure she knows that. We have been to the park alot this week. It is one of my, Berlynn. Jada, Jack and Russel's favourite places. The water fountain is so brilliant. I spend alot of time playing and drinking the water and Jack and Russel love it too. I usually leave the park very wet and my mom unimpressed.
This week was okay. I think I have gained a bit of weight so hopefully when I see my doctor on Friday he will be happy (and have bought the Barney he promised?) I am not drinking too many bottles at the moment - one to one and a half in the day. My mom constantly encourages me but I don't know - I just don't want that much. I am sleeping really well - which makes for a change. Most nights I have slept through and I am not gagging so much - thank goodness! I have also discovered 'words' and am trying so so hard to say them. Often I get a big person just looking at me with a confused look on their face, trying to figure out what I am saying but when they work it out - I am so happy and so proud. I am still giving little Jada a hard time. I like to just lie on her and pinch her a bit. I am older than her you know! And I am making sure she knows that. We have been to the park alot this week. It is one of my, Berlynn. Jada, Jack and Russel's favourite places. The water fountain is so brilliant. I spend alot of time playing and drinking the water and Jack and Russel love it too. I usually leave the park very wet and my mom unimpressed.
Mom's comment: This week has definately been better from tolerating her tube feeds at night. She is not gagging too much and wow! for the first time ever she has slept through 5 days in a row. The household is feeling vagually human again as Jada too has been sleeping through. Camden seems to have gained a few more grams (was 8.3 and she is about 8.5/6) - so we are heading in the right direction. Her consumption orally is definately affected by her tube feeds. She just drinks less as her body does not seem to need it as she knows she will get it anyway when she sleeps. The psychology is amazing. She is still active and full of energy and just a total joy to be with. She still loves ham and vienna sausage and still puts massive pieces in her mouth, sucks, chews a bit and then spits it out. This week she has had a few choking episodes. I try not to intervene too quickly. She often runs to me to help her - she kind of panics. I just reassure her, make sure she is breathing and then watch and encourage her to clear it by coughing or (our main aim) swallowing what is there. I also try and get her to take a sip of water to help the piece of food (which is usually quite small) go down. Sometimes she will sip the water and it does help. Her speech development is really coming along and loves it when you know what she is saying. She gets this proud grin and nodds with achievement. It just makes you want to cry. With Camden you seem to notice all the finer details and I think it's because you are so focused on her reaching her milestones due to her condition and you work so hard everyday with different exercises and therapies that when she can do something - it is incredible, another little miracle.
WEEK 12 and 3: Friday 5 February - Thursday 18 February
It's been a rough week. My little sister Jada somehow licked an ant trap which contains some poisonous stuff inside so my mom rushed her to the hospital and they had to monitor her for 36 hours. She's fine and had no symptoms so she must have taken in such a small amount - thank goodness. I however was totally put out by my mom having to be in the hospital and not being around. I could not sleep. And cried alot and was very clingy to my night nurse, Jacobeth. I am still only drinking about 150mls a day - which is one bottle. BUT HEY GUESS WHAT? ON TUESDAY 16 FEBRUARY I WOKE AND IN ONE SITTING I DRANK AN ENTIRE 200MLS OF MY FORMULA. WHOHOOOOOOO! I have been a bit sick so I think I was extra thirsty. Jacobeth felt that when she tells my mom, my mom would think that she drank the bottle, not me.
I have put on about 140grams - tiny amount. My doctor is just happy that I have put on something and says I must keep on putting on weight. The three night tube feeds that I get at the moment really make me gag and feel uncomfortable. Sometimes I get such an upset tummy that my mom and dad have to put 2 nappies on me. It's not very nice and we all don't sleep very well. I can wake up 5 times a night easy. If I don't have the upset tummy or too much gagging, I sleep okay. My mom is exhausted. I am still trying to eat solid food - alot of chewing and spitting out still. I have dinner with Berlynn at our little table every night and now that Jada can crawl and pull herself up, she joins in, so it's one very big mess. But lots of fun. Jada eats everything. She even tries to eat the food that I have chewed and spat out. Pretty gross so my mom has to watch her closely and give her her own bowl of food.
It's been a rough week. My little sister Jada somehow licked an ant trap which contains some poisonous stuff inside so my mom rushed her to the hospital and they had to monitor her for 36 hours. She's fine and had no symptoms so she must have taken in such a small amount - thank goodness. I however was totally put out by my mom having to be in the hospital and not being around. I could not sleep. And cried alot and was very clingy to my night nurse, Jacobeth. I am still only drinking about 150mls a day - which is one bottle. BUT HEY GUESS WHAT? ON TUESDAY 16 FEBRUARY I WOKE AND IN ONE SITTING I DRANK AN ENTIRE 200MLS OF MY FORMULA. WHOHOOOOOOO! I have been a bit sick so I think I was extra thirsty. Jacobeth felt that when she tells my mom, my mom would think that she drank the bottle, not me.
I have put on about 140grams - tiny amount. My doctor is just happy that I have put on something and says I must keep on putting on weight. The three night tube feeds that I get at the moment really make me gag and feel uncomfortable. Sometimes I get such an upset tummy that my mom and dad have to put 2 nappies on me. It's not very nice and we all don't sleep very well. I can wake up 5 times a night easy. If I don't have the upset tummy or too much gagging, I sleep okay. My mom is exhausted. I am still trying to eat solid food - alot of chewing and spitting out still. I have dinner with Berlynn at our little table every night and now that Jada can crawl and pull herself up, she joins in, so it's one very big mess. But lots of fun. Jada eats everything. She even tries to eat the food that I have chewed and spat out. Pretty gross so my mom has to watch her closely and give her her own bowl of food.
Mom's comment: The exhaustion is setting in. After 2 nights in hospital with Jada on a bad pull out couch and a brilliant doctor who is so busy he does his rounds at 23h00 at night and then coming home to Camden who is miss clingy at the moment and has such an upset tummy from the tube feeds and therefore up most of the night and then Jada started teething, so she's up too. Its been rough! And the stress doesn't help either. Camden has put on weigh but such a small amount. I am starting to stress out. She is still so thin. Skin and bones. We are giving her the calories but no major weight gain? I am not religious at all but I am saying my prayers to anyone out there. She is just so sweet and I just want her to be okay. Tube feeding is terrible - she gaggs, she is restless, she gets an upset tummy. She still tries to eat food and it is so sweet to see her sitting with Berlynn having 'dinner'. I find that if she has had a bad night, her oral consumption is not good at all. Right now, I am pretty scared. We still don't know why she is the way she is and what the future holds for her. Sometimes you think she is going to be just fine and then she has such a rough night - it just scares the hell out of you. And then you have a day like Tuesday 16th - she drank 200mls in one sitting. It took her 35 mins. Phenomenal! Thumbs up! Awesome! Wow!