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12 June 2010
We are trying the netcoaching programme again!
Weight: 9.6kg Height: 82cm
I have had a severe runny tummy for over a week and I am very unhappy and uncomfortable for about 4 hours after my daytime tube feed. It has made me very thirsty and so I am drinking much more water than before. That's pretty good hey? I can even do consecutive sips which is apparently one of the hardest swallows to do. The doctors in Austria say I am a bit rare as very few kids who are tube fed drink water orally first. Water is apparently the most difficult to coordinate, as it moves so quickly down your throat. My mom spoke to the professor about how I have been and she said that because I am showing more signs of swallowing, now is a perfect time to try and wean me again. She felt the tube feeding may be causing my upset tummy as the formula is very rich. Who knows - maybe we won't have to go to Austria?
We have dropped my daytime feed so I only get fed when I am sleeping at night (20h30 and 24h00). During the day I am starving. In 2 days I went through 24 fishcakes and 1 whole chicken. I suck and chew but then spit it all out. My mom went and bought 8 more packets of fish cakes and 2 more whole chickens.
The professor says I am doing well and as the days pass I should start spitting less. They have also told me that my peg (the place where I eat with the tube) is broken so I have to eat with my mouth now. I try and eat most of the day. The kitchen counter is a smorgasbord of all sorts of food. I am already much happier without my daytime tube feed. So I am going to give this my best shot.
We are trying the netcoaching programme again!
Weight: 9.6kg Height: 82cm
I have had a severe runny tummy for over a week and I am very unhappy and uncomfortable for about 4 hours after my daytime tube feed. It has made me very thirsty and so I am drinking much more water than before. That's pretty good hey? I can even do consecutive sips which is apparently one of the hardest swallows to do. The doctors in Austria say I am a bit rare as very few kids who are tube fed drink water orally first. Water is apparently the most difficult to coordinate, as it moves so quickly down your throat. My mom spoke to the professor about how I have been and she said that because I am showing more signs of swallowing, now is a perfect time to try and wean me again. She felt the tube feeding may be causing my upset tummy as the formula is very rich. Who knows - maybe we won't have to go to Austria?
We have dropped my daytime feed so I only get fed when I am sleeping at night (20h30 and 24h00). During the day I am starving. In 2 days I went through 24 fishcakes and 1 whole chicken. I suck and chew but then spit it all out. My mom went and bought 8 more packets of fish cakes and 2 more whole chickens.
The professor says I am doing well and as the days pass I should start spitting less. They have also told me that my peg (the place where I eat with the tube) is broken so I have to eat with my mouth now. I try and eat most of the day. The kitchen counter is a smorgasbord of all sorts of food. I am already much happier without my daytime tube feed. So I am going to give this my best shot.
21 June 2010
In the last week I have managed to chew and spit my way through 48 fish cakes, 3 whole chickens and alot of toast. I am not sure how much I am actually swallowing as I still spit most of it out. I do a front back tongue movement instead of a sideways one. We have had to cover the couch in old blankets as there is just food everywhere. It was my Dad's birthday yesterday and we had a picnic in the park. I had a go at everything that was on offer - sandwiches with artichokes and cheese, some with salami, others with parma ham, lentils, poppy seed cake, stromboli, biltong. My mom often reminds me to try and swallow some of my food - and immediately I say 'Jenny' as Jenny (my speech therapist) is trying to teach me to swallow.
Mom's comments: It is interesting doing this the second time around. The main difference is that after a week she is where she was only after 3 weeks last time. Another slight difference is that she is a bit more experimental with a bigger variety of food, like oats, sandwiches, ice cream. Last time she started to drink formula from her bottle but this time she is not interested in it at all and will only drink water. Tonight (21 June) we are dropping another feed - so she will be on 1x230ml tube feed at night only. She is swallowing small amounts of food - without a doubt - still not enough yet. She is losing weight but not sure exactly how much yet. We are hoping that now when we start to drop further feeds - the instinct of I need to actually swallow this will start to kick in. When you watch her with food - it amazing as she looks like she is eating. She holds a spoon well, puts food onto it and puts it in her mouth. But then about 10 secs later it all gets pushed out again.
In the last week I have managed to chew and spit my way through 48 fish cakes, 3 whole chickens and alot of toast. I am not sure how much I am actually swallowing as I still spit most of it out. I do a front back tongue movement instead of a sideways one. We have had to cover the couch in old blankets as there is just food everywhere. It was my Dad's birthday yesterday and we had a picnic in the park. I had a go at everything that was on offer - sandwiches with artichokes and cheese, some with salami, others with parma ham, lentils, poppy seed cake, stromboli, biltong. My mom often reminds me to try and swallow some of my food - and immediately I say 'Jenny' as Jenny (my speech therapist) is trying to teach me to swallow.
Mom's comments: It is interesting doing this the second time around. The main difference is that after a week she is where she was only after 3 weeks last time. Another slight difference is that she is a bit more experimental with a bigger variety of food, like oats, sandwiches, ice cream. Last time she started to drink formula from her bottle but this time she is not interested in it at all and will only drink water. Tonight (21 June) we are dropping another feed - so she will be on 1x230ml tube feed at night only. She is swallowing small amounts of food - without a doubt - still not enough yet. She is losing weight but not sure exactly how much yet. We are hoping that now when we start to drop further feeds - the instinct of I need to actually swallow this will start to kick in. When you watch her with food - it amazing as she looks like she is eating. She holds a spoon well, puts food onto it and puts it in her mouth. But then about 10 secs later it all gets pushed out again.
23 June 2010
Okay, I am now only on 1/3 of my usual tube feeds. I get this at 20h30 when I am sleeping. I am starting to get very clingy - just like I was on the first netcoaching attempt. I guess I am getting hungry and looking to mommy to make me feel better. I am still trying so hard to eat - fish cakes (not so much anymore), roast chicken (definate favourite), toast with fish paste (I just like to have it in a bowl in front of me), butternut soup (I may taste it once but then that's enough), ham (my mom just doesn't buy enough of this - I can chew on an entire packet in 5 minutes but I like to chew on really big pieces which I spit out), toasted cheese (when my sister has some I give it a go but spit it out), pasta (suck it a bit but then spit it out), fish and pap (yum!! My nannies make this and it's good but not sure I am swallowing anything as I am surrounded by chewed fish and pap), baked beans (had a good go with this but I spit it out again), Barney cupcakes (made these with my cousin and sister but just put mine in the bowl and did not eat it). The top of my list that definately goes down is water.
Moms comments: She is losing weight quite rapidly. You can see and feel. It's awful. She takes so long to gain weight but looses it so quickly. We surround her with food all day long. She loves to go to the fridge and get the roast chicken, the ham, even mushrooms. When I make myself a salad - she makes herself one too. It's just getting her to swallow some of it. She is starting to wake up early - about 4 or 5pm - hungry - I think, but she only wants water. She is a bit sick at the moment - running a slight fever. I am doing extra nebulising and will access in 24hours if we need the doctor. I will also be weighing her on an accurate scale tomorrow.
Okay, I am now only on 1/3 of my usual tube feeds. I get this at 20h30 when I am sleeping. I am starting to get very clingy - just like I was on the first netcoaching attempt. I guess I am getting hungry and looking to mommy to make me feel better. I am still trying so hard to eat - fish cakes (not so much anymore), roast chicken (definate favourite), toast with fish paste (I just like to have it in a bowl in front of me), butternut soup (I may taste it once but then that's enough), ham (my mom just doesn't buy enough of this - I can chew on an entire packet in 5 minutes but I like to chew on really big pieces which I spit out), toasted cheese (when my sister has some I give it a go but spit it out), pasta (suck it a bit but then spit it out), fish and pap (yum!! My nannies make this and it's good but not sure I am swallowing anything as I am surrounded by chewed fish and pap), baked beans (had a good go with this but I spit it out again), Barney cupcakes (made these with my cousin and sister but just put mine in the bowl and did not eat it). The top of my list that definately goes down is water.
Moms comments: She is losing weight quite rapidly. You can see and feel. It's awful. She takes so long to gain weight but looses it so quickly. We surround her with food all day long. She loves to go to the fridge and get the roast chicken, the ham, even mushrooms. When I make myself a salad - she makes herself one too. It's just getting her to swallow some of it. She is starting to wake up early - about 4 or 5pm - hungry - I think, but she only wants water. She is a bit sick at the moment - running a slight fever. I am doing extra nebulising and will access in 24hours if we need the doctor. I will also be weighing her on an accurate scale tomorrow.
25 June 2010
I haven't been too good. I am super clingy and really tired. I got weighed yesterday and it's not good. I weigh 8.83kg. That means in 2 weeks I have already lost 8.7% of my weight and the clinic in Austria only likes you to lose 10%. But hey, I have grown 2cm taller. I am still enjoying chewing on some ham - well the entire packet in about a few minutes. My mom sets up a "playpicnic" for me everyday on the counter with soup. baked beans, custard, chicken, ham, pureed food, toast, bread, rice, pizza etc all in little bowls. I do occasionally try and take a sip of my big sisters juice but just a little drop and that's enough.
Moms comments: It is getting really tough. To watch your child get so skinny so quickly is frightening. I can feel her bum bones when I carry her. Her younger sister, Jada is so much heavier than her and is wearing the same size clothes as her. She is lethargic, wants me all the time and wants to sleep alot. I gave her a bit of maltodextrin in the water she drank orally this morning - in the hope that it will give her a bit of energy. I have also offered her all types of food but she just says "No!" As I am typing this, she is fast asleep in my arms. This is scary stuff and the hardest part for me as her mom is knowing that she is the only person who can help herself. I can't do it for her. I wish I could. She just needs to make the transition to actually swallowing some food and feeling satisfied. She had a really upset tummy again this morning and I think some of the weight loss must be the diarrhoea. It is so tough this time around. We are not very religious but at this stage I will take prayers, anything. I will be sending the Professor a video of her trying to eat today and an update on her weight loss. Let's see what she says.
A big day for me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
29 June 2010
Things have improved a bit. Not only on Sunday 27th June did Argentina (our team) beat Mexico 3-1 but I started to drink my formula orally! My mom was giving Jada her bottle in the morning and asked me if I wanted my bottle. To everyones great suprise I said yes! I drank about 20mls orally and didn't spill anything!. Later in the morning we took a ride on the new Gautrain for fun. My big sister Berlynn drank all the water my mom had bought along so when I wanted some there was only my formula in a bottle for me to drink. I drank 100mls of it. No problem - Wow! When I got home in the afternoon I wanted more bottle so drank a further 120mls. So in 24hrs I drank 250mls of formula. Whooohooo! Since Sunday I have been drinking my bottle and get through about 2x170mls a day.
The Professor in Austria had a look at my eating video and said:
"Camden is perceving the mashy food as "foreign body" - like when you get a small stone or piece of paper in your mouth - she is trying to get it out because she is not accustomed to it. She just needs time. It is great that she is drinking formula. She can drink as much as she wants. Camden looks really sweet and she definately will make it!
Time, trust and keep confident!"
Moms comments: What a huge weight of our shoulders. Taking her formula orally means she can get in some calories and hopefully her weight can stabilise. Since Sunday she looks so much better. Her eyes had dark rings around them and were a bit sucked in. But that's improved as well as her spirit. On Saturday I said to my husband that I was not sure if I could watch her lose any more weight (she is just skin and bone) but when she started to drink her formula it gave me a new hope - we are not going backwards this time. We are going to do what the Prof says - give her time, trust the programme and keep confident. We will get her tube free this time. With her solid food - we will just keep trying. Her speech is also starting to improve ( Jenny, her speech therapist, would be so proud of her). She continues to be such an inspiration to me - what a soldier she is!
Things have improved a bit. Not only on Sunday 27th June did Argentina (our team) beat Mexico 3-1 but I started to drink my formula orally! My mom was giving Jada her bottle in the morning and asked me if I wanted my bottle. To everyones great suprise I said yes! I drank about 20mls orally and didn't spill anything!. Later in the morning we took a ride on the new Gautrain for fun. My big sister Berlynn drank all the water my mom had bought along so when I wanted some there was only my formula in a bottle for me to drink. I drank 100mls of it. No problem - Wow! When I got home in the afternoon I wanted more bottle so drank a further 120mls. So in 24hrs I drank 250mls of formula. Whooohooo! Since Sunday I have been drinking my bottle and get through about 2x170mls a day.
The Professor in Austria had a look at my eating video and said:
"Camden is perceving the mashy food as "foreign body" - like when you get a small stone or piece of paper in your mouth - she is trying to get it out because she is not accustomed to it. She just needs time. It is great that she is drinking formula. She can drink as much as she wants. Camden looks really sweet and she definately will make it!
Time, trust and keep confident!"
Moms comments: What a huge weight of our shoulders. Taking her formula orally means she can get in some calories and hopefully her weight can stabilise. Since Sunday she looks so much better. Her eyes had dark rings around them and were a bit sucked in. But that's improved as well as her spirit. On Saturday I said to my husband that I was not sure if I could watch her lose any more weight (she is just skin and bone) but when she started to drink her formula it gave me a new hope - we are not going backwards this time. We are going to do what the Prof says - give her time, trust the programme and keep confident. We will get her tube free this time. With her solid food - we will just keep trying. Her speech is also starting to improve ( Jenny, her speech therapist, would be so proud of her). She continues to be such an inspiration to me - what a soldier she is!
1 July 2010
Today life is good! I went to the clinic to get weighed and for the first time on the programme, I have gained weight!!!!! I weigh 9.05kg!!!! 140 grams in a week. Awesome stuff. That's the best weight I have put on in ages. Something must be working. My mom shrieked so loudly when she saw the scale, the nurse nearly jumped out of her skin.
I still drink about 3 bottles orally a day and my mom gives me one tube feed at night (which I am not supposed to know about as I am sound asleep) but I guess that's enough calories to make me grow. And maybe some of the food I am trying to eat is actually going down into my tummy and not down onto the floor and into Jack and Russel's tummy. They too have put on weight. I quite like boiled eggs at the moment. My mom used to buy about 6 eggs a month but now she is buying 12 eggs a week. My mom and dad and Berlynn keep encouraging me to try and swallow small bits. I still love stuffing too much food in my mouth and it's just way too much, even for an adult to swallow.
Moms comments: Momentous milestone that only a few parents can truelly understand. She is gaining weight and we are down to only one tube feed a day. It's a miracle. A relief. A gift. A historic day in her life. 140grams in one week - that's big for Camden. On the first netcoaching attempt, she never gained weight even when she was taking a bottle orally - she just lost weight slowly each day. But this time she is and it's awesome! It may be due to the fact that she started to take a bottle into the third week and last time she only took one in the sixth week. She sips on her bottles all day long and inbetween her bottles she sits on the counter top and tries to eat all sorts of food. So basically it is oral exploration non-stop all day long. I am sure in a few days time, we will drop her final tube feed.
Today life is good! I went to the clinic to get weighed and for the first time on the programme, I have gained weight!!!!! I weigh 9.05kg!!!! 140 grams in a week. Awesome stuff. That's the best weight I have put on in ages. Something must be working. My mom shrieked so loudly when she saw the scale, the nurse nearly jumped out of her skin.
I still drink about 3 bottles orally a day and my mom gives me one tube feed at night (which I am not supposed to know about as I am sound asleep) but I guess that's enough calories to make me grow. And maybe some of the food I am trying to eat is actually going down into my tummy and not down onto the floor and into Jack and Russel's tummy. They too have put on weight. I quite like boiled eggs at the moment. My mom used to buy about 6 eggs a month but now she is buying 12 eggs a week. My mom and dad and Berlynn keep encouraging me to try and swallow small bits. I still love stuffing too much food in my mouth and it's just way too much, even for an adult to swallow.
Moms comments: Momentous milestone that only a few parents can truelly understand. She is gaining weight and we are down to only one tube feed a day. It's a miracle. A relief. A gift. A historic day in her life. 140grams in one week - that's big for Camden. On the first netcoaching attempt, she never gained weight even when she was taking a bottle orally - she just lost weight slowly each day. But this time she is and it's awesome! It may be due to the fact that she started to take a bottle into the third week and last time she only took one in the sixth week. She sips on her bottles all day long and inbetween her bottles she sits on the counter top and tries to eat all sorts of food. So basically it is oral exploration non-stop all day long. I am sure in a few days time, we will drop her final tube feed.
5 July 2010
The weekend was a sad one - but only because Argentina was beaten 4-0 by Germany. Ouch! We are running out of blue face paint so maybe it was meant to be. I am still drinking my bottle all day long and trying lots of boiled eggs eggs eggs. I am trying to talk alot too and am getting much better at repeating difficult words. I even said "Happy Birthday" to my Nan (granny) on the phone. She was super impressed!
Moms comment: She is really doing well and according to our home scale, she is still gaining weight. On 7 July 2010 the Professor has said we should drop her last night feed. The Prof thought 07/07 would be a great date to remember "no more tube feeding 'hopefully' forever!" She feels Camden has the ability to sustain herself on oral formula bottles for now until she has practised and hopefully gained the confidence to swallow food in about 2-3 months time. This is a great place to be again. NO TUBE FEEDS! This time she has a certain sparkle in her eye which fills me with joy and more confidence that she can really do this. She is so much happier without her tube feeds and she knows it. She is very determined and totally understands what we are trying to achieve, which makes me count my blessings as we know that there are many kids out there who are alot more severe than Camden. Although we do not know what lies ahead (due to her undiagnosed condition) all I can say that so far it's been a long, hard, challenging, encouraging, fantastic, joyous and, at the moment an 'egg' filled road. It has been amazing and our journey continues.
The weekend was a sad one - but only because Argentina was beaten 4-0 by Germany. Ouch! We are running out of blue face paint so maybe it was meant to be. I am still drinking my bottle all day long and trying lots of boiled eggs eggs eggs. I am trying to talk alot too and am getting much better at repeating difficult words. I even said "Happy Birthday" to my Nan (granny) on the phone. She was super impressed!
Moms comment: She is really doing well and according to our home scale, she is still gaining weight. On 7 July 2010 the Professor has said we should drop her last night feed. The Prof thought 07/07 would be a great date to remember "no more tube feeding 'hopefully' forever!" She feels Camden has the ability to sustain herself on oral formula bottles for now until she has practised and hopefully gained the confidence to swallow food in about 2-3 months time. This is a great place to be again. NO TUBE FEEDS! This time she has a certain sparkle in her eye which fills me with joy and more confidence that she can really do this. She is so much happier without her tube feeds and she knows it. She is very determined and totally understands what we are trying to achieve, which makes me count my blessings as we know that there are many kids out there who are alot more severe than Camden. Although we do not know what lies ahead (due to her undiagnosed condition) all I can say that so far it's been a long, hard, challenging, encouraging, fantastic, joyous and, at the moment an 'egg' filled road. It has been amazing and our journey continues.
11 July 2010
Since the 7th I have been off all tube feeds! Yahooooooo! And so far I am much happier than I have ever been. On the morning of the 8th, I weighed 9.12kg so I am up a little bit and my mom is going to weigh me again on the 14th - so hold thumbs. Still chewing and spitting out - lots of eggs. Viva Espania! We were supporting Spain in the final and they won. My mom and dad actually went to the match and said it was incredible to be there. Maybe when I am big (Brazil 2014) I can go too.
Moms comment: She is really doing well. Since we dropped her last night feed, she gets through about 3 bottles in 24 hours. Sshe does wake at around 1am, very hungry and wanting her bottle. Once she has had some, she settles again and goes back to sleep - like a normal kid! This is good. The only time now that we use the tube is to medicate her with her antibiotics which happens every Friday, Saturday and Sunday. The day we actually do remove it will be one huge day. Some of the kids who go to the clinic in Graz are able to remove them when they leave and as a ritual, they take them to the river and they get to throw them into the water and watch them get washed away.
Since the 7th I have been off all tube feeds! Yahooooooo! And so far I am much happier than I have ever been. On the morning of the 8th, I weighed 9.12kg so I am up a little bit and my mom is going to weigh me again on the 14th - so hold thumbs. Still chewing and spitting out - lots of eggs. Viva Espania! We were supporting Spain in the final and they won. My mom and dad actually went to the match and said it was incredible to be there. Maybe when I am big (Brazil 2014) I can go too.
Moms comment: She is really doing well. Since we dropped her last night feed, she gets through about 3 bottles in 24 hours. Sshe does wake at around 1am, very hungry and wanting her bottle. Once she has had some, she settles again and goes back to sleep - like a normal kid! This is good. The only time now that we use the tube is to medicate her with her antibiotics which happens every Friday, Saturday and Sunday. The day we actually do remove it will be one huge day. Some of the kids who go to the clinic in Graz are able to remove them when they leave and as a ritual, they take them to the river and they get to throw them into the water and watch them get washed away.
15 July 2010
I HAVE BEEN OFF MY TUBE FOR ONE WEEK NOW! AND OUR GOOD FRIENDS, ANDREW AND LISA HAD A BABY BOY THIS MORNING. MAZELTOV!
I got weighed today - 8.95kg so I have lost 170grams in one week of no tube feeds. Not too bad. I started speech therapy again after a break of 4 weeks. It was great to see Jenny again. She had a look at how I chewed an egg and felt that there is definately improvement in the way I use my mouth. She also felt I swallowed some of the egg yellow. Mmmmm! The professor in Graz is busy accessing my weight at the moment. She says if it is stable, we won't have to go to Graz! And we can go on holiday instead. Cool! Life without tube feeds is good: less pain, less gagging, no spiderwebs (stringy mucus that comes out my mouth), lots of tasting of different foods (especially egg and chicken) and I get to make the biggest mess you have ever seen and no one gets cross.
I HAVE BEEN OFF MY TUBE FOR ONE WEEK NOW! AND OUR GOOD FRIENDS, ANDREW AND LISA HAD A BABY BOY THIS MORNING. MAZELTOV!
I got weighed today - 8.95kg so I have lost 170grams in one week of no tube feeds. Not too bad. I started speech therapy again after a break of 4 weeks. It was great to see Jenny again. She had a look at how I chewed an egg and felt that there is definately improvement in the way I use my mouth. She also felt I swallowed some of the egg yellow. Mmmmm! The professor in Graz is busy accessing my weight at the moment. She says if it is stable, we won't have to go to Graz! And we can go on holiday instead. Cool! Life without tube feeds is good: less pain, less gagging, no spiderwebs (stringy mucus that comes out my mouth), lots of tasting of different foods (especially egg and chicken) and I get to make the biggest mess you have ever seen and no one gets cross.
20 July 2010
It will be two weeks tomorrow and no tube feeds. That's a record! I am proud and very happy.
This is what the latest email from the Professor in Graz said:
"Camden is doing so well!!! The weight loss is absolutely normal and extremely little in comparison to other children. All in all it's about 5% in the course of entire weaning process. Camden is a Champion! It looks like she has done it with the NETcoaching herself, and ofcourse with mom and dad's help and the support of us. Congratulations!!!! I am very happy and proud of you all."
So she thinks I am doing pretty well and we probably don't have to go to the clinic in Graz. Whoooooooooooooooooooooooo! And we made yummy pizza's with my dad this weekend. I never knew life could be this good!
Mom's comment: When I received the email from the Professor, well, I just burst into tears. To hear the words, "...it looks like she has done it..." has got to be the best feeling I have ever felt. We have been in this for so long and there were so many times when you wondered if we would ever reach this point. It's here. And we are feeling it! We are on day 14!!! And she is so happy, so determined and trying so hard to eat, I could not ask for anything else. She is drinking her bottles of formula brilliantly and for the first time in her life she has a bit of colour in her cheeks. Thank you to the incredible Professor who's knowledge, support and encouragement has got her here and the unconditional help and patience of some of her therapists. Our Little Miss Miracle! We are so proud of you.
It will be two weeks tomorrow and no tube feeds. That's a record! I am proud and very happy.
This is what the latest email from the Professor in Graz said:
"Camden is doing so well!!! The weight loss is absolutely normal and extremely little in comparison to other children. All in all it's about 5% in the course of entire weaning process. Camden is a Champion! It looks like she has done it with the NETcoaching herself, and ofcourse with mom and dad's help and the support of us. Congratulations!!!! I am very happy and proud of you all."
So she thinks I am doing pretty well and we probably don't have to go to the clinic in Graz. Whoooooooooooooooooooooooo! And we made yummy pizza's with my dad this weekend. I never knew life could be this good!
Mom's comment: When I received the email from the Professor, well, I just burst into tears. To hear the words, "...it looks like she has done it..." has got to be the best feeling I have ever felt. We have been in this for so long and there were so many times when you wondered if we would ever reach this point. It's here. And we are feeling it! We are on day 14!!! And she is so happy, so determined and trying so hard to eat, I could not ask for anything else. She is drinking her bottles of formula brilliantly and for the first time in her life she has a bit of colour in her cheeks. Thank you to the incredible Professor who's knowledge, support and encouragement has got her here and the unconditional help and patience of some of her therapists. Our Little Miss Miracle! We are so proud of you.
02 August 2010
26 days of no tube feeds today - hey that' nearly a month! DAMN AWESOME STUFF! The photo above is me with my two sisters having dinner together. I am the one with the Einstein hairdo and 2 plates of food. Who would have thought I would ever sit at a dinner table and 'eat' with my sissies. I am doing so well. I still battle to swallow alot of my food with most of it landing on the floor, the couch, the table, the chairs - too Jack and Russel's sheer delight. I am still trying to co-ordinate it all and am not chewing the food enough and stuffing too much in all at once. But we are really working hard at it. Jenny (my speech therapist) keeps showing me how to take smaller bits, then chew and then swallow and on Thursday I did it! I swallowed the small bits and I didn't even gagg! Pretty impressive. I think if I just keep on trying like this - I will mess a little less and more will go into my tummy. My cheeks still have colour in them and are starting to fatten up a bit. Just need to work on my waist though as often when I run, my pants seem to fall down.
Mom's comment: She is definately weaned! She weighs 9.03kg which means she has gained a tiny bit of weight and is stable. It's a dream come true. We thought back to her first year when she was just so sick and many doctors told us she may never swallow and probably won't live till one. Thankfully, they were wrong and I can truelly say that we are one pair of very blessed happy, proud parents. We have also been doing a 'test' to see exactly were she is in terms of her intellectual development and she appears to be spot on for her age, which is incredible considering everything she missed out on in her first year and all the pain she has had to live with. She will start nursery school at the beginning of next year, hopefully with a lunch box filled with goodies that she will eat. She has had a few aches - as it has been battling to work, so I have added a bit of fibre into her bottle which seems to be helping alot. This is the first time her tummy has battled to work since she was born - which in a way to us is a sign that more and more food is going down but we just need to work on a few more veges and fruit as at the moment all she really wants is egg and sausage and chicken - but hopefully we will get it right in time. We still give her anti-biotics 3 days a week and we are trying to get her to take this orally but she just does not want to know about it. So unfortunately this is the only time I have to pull out the tubes, syringes etc and use the mic-key. I am seeing her paed again in a week and will ask him for any suggestions or tricks he may have as we would really like to remove the mic-key from her tummy - and free her forever.
26 days of no tube feeds today - hey that' nearly a month! DAMN AWESOME STUFF! The photo above is me with my two sisters having dinner together. I am the one with the Einstein hairdo and 2 plates of food. Who would have thought I would ever sit at a dinner table and 'eat' with my sissies. I am doing so well. I still battle to swallow alot of my food with most of it landing on the floor, the couch, the table, the chairs - too Jack and Russel's sheer delight. I am still trying to co-ordinate it all and am not chewing the food enough and stuffing too much in all at once. But we are really working hard at it. Jenny (my speech therapist) keeps showing me how to take smaller bits, then chew and then swallow and on Thursday I did it! I swallowed the small bits and I didn't even gagg! Pretty impressive. I think if I just keep on trying like this - I will mess a little less and more will go into my tummy. My cheeks still have colour in them and are starting to fatten up a bit. Just need to work on my waist though as often when I run, my pants seem to fall down.
Mom's comment: She is definately weaned! She weighs 9.03kg which means she has gained a tiny bit of weight and is stable. It's a dream come true. We thought back to her first year when she was just so sick and many doctors told us she may never swallow and probably won't live till one. Thankfully, they were wrong and I can truelly say that we are one pair of very blessed happy, proud parents. We have also been doing a 'test' to see exactly were she is in terms of her intellectual development and she appears to be spot on for her age, which is incredible considering everything she missed out on in her first year and all the pain she has had to live with. She will start nursery school at the beginning of next year, hopefully with a lunch box filled with goodies that she will eat. She has had a few aches - as it has been battling to work, so I have added a bit of fibre into her bottle which seems to be helping alot. This is the first time her tummy has battled to work since she was born - which in a way to us is a sign that more and more food is going down but we just need to work on a few more veges and fruit as at the moment all she really wants is egg and sausage and chicken - but hopefully we will get it right in time. We still give her anti-biotics 3 days a week and we are trying to get her to take this orally but she just does not want to know about it. So unfortunately this is the only time I have to pull out the tubes, syringes etc and use the mic-key. I am seeing her paed again in a week and will ask him for any suggestions or tricks he may have as we would really like to remove the mic-key from her tummy - and free her forever.