Ash is doing quite well. She has had a complete turnaround in relation to her interest in touching and tasting food and drink. However, she hasn't really managed to take much in the way of substance and she's unbelievably slow at eating! You need the patience of a Saint!
But she's trying...very hard. We are still giving her a tube feed at night and hope that she will start to take more in the next few days.
One of the things that we are doing everyday is something called a PlayPicnic, which they do in the Feeding Clinic in Austria. This is an opportunity for Ashling to play with food and eat some if she so wishes. The idea is that it is a relaxed situation with no pressure whatsoever. If you'd like to watch one or two of the videos of this, you can look at the following videos.
Thanks for your interest and good wishes. We will keep this updated.
Lunch Time:
http://www.youtube.com/watch?v=lyi7X4wuFXs
Our SLT at playpicnic with us:
http://www.youtube.com/watch?v=0HP-wp_wqFg
Ashling's first time using a straw:
http://www.youtube.com/watch?v=of5NLismVmg
Ashling eating marmite
http://www.youtube.com/watch?v=TkP0jpiJjGo
Play Picnic -near the end:
http://www.youtube.com/watch?v=HZ0oBRc1eRM
Hello again
Friday, March 27, 2009
Tuesday, March 24, 2009
The time has come!!!! March 22nd, 2009
Hi All,
Just a quick update on Ash’s feeding! As you know we’ve wanted to try weaning Ashling off tube feeds for a long time, and ultimately starve her in an effort to get her to eat more. Although we’ve tried a couple of times for a few days and it didn’t work, we’ve been waiting for the right time to try it properly and for a longer period of time. Now, the time has come…..quite unexpectedly!
We had intended on doing this sometime over the next month but Ashling was sick last week and she had more mucus than ever and couldn’t keep much of anything down. To help her, we stopped giving her milk as dairy causes even more mucus. The offshot of this was that she started showing an interest in food and drink as soon as she started feeling better as she was only getting a very small amount of tube feeds. This started 5 days ago and though she has lost weight already as we have kept her on smaller amounts of food, she is showing increased interest in eating.
Ger and I had been thinking about taking Ashling to a Feeding Clinic in Austria, where kids are basically starved under medical supervision, with a lot of input from various professionals. They usually spend the first week weaning the child and then go cold turkey. The programme takes about 3 weeks and while kids do lose a lot of weight, they have a 99% success rate of the child not needing the tube anymore after leaving the Clinic. As it happens, we have nearly finished a week of weaning her (unconsciously) and so we are planning on going cold-turkey next. We have made contact with this feeding Clinic and they are going to provide online support and guidelines to follow over the next fortnight. The link is http://www.notube.at/home/en/index.php if you would like to look at it. We know 2 other families here in Auckland we have taken their kids to thie Clinic and have successfully weaned their kids off their tube feeds. They have been a wealth of information and a fantastic support for us. We also have our Speech and Language Therapist, Nurse and Dietician on board (though their input will be miminal) so we’re going full steam ahead, starting tomorrow. Nerve-wrecking but exciting stuff!
We really feel the time is right. Ash has been off oxygen for over 3 months now and seems to be getting much stronger. However, over the past few months her eating has become more unpredictable and sometimes she neither eats nor drinks at all during the day and ends up totally dependent on what we give her by her tube. Although her medical history speaks for itself, nowadays most of her oral aversion has gone and we believe that a lot of her problems and more mental and behavioral than physical. The main physical challenges for her are that she is not able to eat very efficiently, doesn’t know how to chew and has never managed to swallow anything other than puree without gagging and then throwing it back up. However, the only way that this will improve is through practice so we have got to the stage now that she needs to desperately want the food in order to learn how to eat it properly. She is able to drink from a sipper cup and she can eat small amounts of pureed food so there is no reason why she can’t do this, though we know she’s going to fight it all the way!!!!
Please pray for us over the next month and send as much positive energy our way as you can.
Thank you,
Caroline and Ger xxxxx
Just a quick update on Ash’s feeding! As you know we’ve wanted to try weaning Ashling off tube feeds for a long time, and ultimately starve her in an effort to get her to eat more. Although we’ve tried a couple of times for a few days and it didn’t work, we’ve been waiting for the right time to try it properly and for a longer period of time. Now, the time has come…..quite unexpectedly!
We had intended on doing this sometime over the next month but Ashling was sick last week and she had more mucus than ever and couldn’t keep much of anything down. To help her, we stopped giving her milk as dairy causes even more mucus. The offshot of this was that she started showing an interest in food and drink as soon as she started feeling better as she was only getting a very small amount of tube feeds. This started 5 days ago and though she has lost weight already as we have kept her on smaller amounts of food, she is showing increased interest in eating.
Ger and I had been thinking about taking Ashling to a Feeding Clinic in Austria, where kids are basically starved under medical supervision, with a lot of input from various professionals. They usually spend the first week weaning the child and then go cold turkey. The programme takes about 3 weeks and while kids do lose a lot of weight, they have a 99% success rate of the child not needing the tube anymore after leaving the Clinic. As it happens, we have nearly finished a week of weaning her (unconsciously) and so we are planning on going cold-turkey next. We have made contact with this feeding Clinic and they are going to provide online support and guidelines to follow over the next fortnight. The link is http://www.notube.at/home/en/index.php if you would like to look at it. We know 2 other families here in Auckland we have taken their kids to thie Clinic and have successfully weaned their kids off their tube feeds. They have been a wealth of information and a fantastic support for us. We also have our Speech and Language Therapist, Nurse and Dietician on board (though their input will be miminal) so we’re going full steam ahead, starting tomorrow. Nerve-wrecking but exciting stuff!
We really feel the time is right. Ash has been off oxygen for over 3 months now and seems to be getting much stronger. However, over the past few months her eating has become more unpredictable and sometimes she neither eats nor drinks at all during the day and ends up totally dependent on what we give her by her tube. Although her medical history speaks for itself, nowadays most of her oral aversion has gone and we believe that a lot of her problems and more mental and behavioral than physical. The main physical challenges for her are that she is not able to eat very efficiently, doesn’t know how to chew and has never managed to swallow anything other than puree without gagging and then throwing it back up. However, the only way that this will improve is through practice so we have got to the stage now that she needs to desperately want the food in order to learn how to eat it properly. She is able to drink from a sipper cup and she can eat small amounts of pureed food so there is no reason why she can’t do this, though we know she’s going to fight it all the way!!!!
Please pray for us over the next month and send as much positive energy our way as you can.
Thank you,
Caroline and Ger xxxxx
Thursday, March 12, 2009
More Videos......10 March 09 (16 months old)
Ash riding her bike!
http://www.youtube.com/watch?v=Y1T5ij20P7w&feature=channel_page
Ash learning French on TV! (She's very advanced you know! Ha ha)
http://www.youtube.com/watch?v=z9FlSBKtGoM&feature=channel
Enjoy!
http://www.youtube.com/watch?v=Y1T5ij20P7w&feature=channel_page
Ash learning French on TV! (She's very advanced you know! Ha ha)
http://www.youtube.com/watch?v=z9FlSBKtGoM&feature=channel
Enjoy!
Wednesday, February 18, 2009
Some cute videos of Ash
These are some recent videos of Ashling:
The first one is of her winking:
http://www.youtube.com/watch?v=n-2FxCkzvsw&feature=channel
The next one is with her Grandad O Shea (this is short and sweet) but I was holding the camera sideways so it's hard to watch properly unless you can turn your screen sideways. Sorry! But you can still hear the laughing that Ashling is doing!
http://www.youtube.com/watch?v=A_dqBFhLuDw&feature=channel
And this one is with her cousins, David and Daniel Neville, who are trying to watch StarWars in peace! (this is a bit longer and not very exciting, but cute)
http://www.youtube.com/watch?v=_QNOIyahp4E&feature=channel
I have a few more videos that I will put on utube over the next few days. Thanks for your interest! xxx
The first one is of her winking:
http://www.youtube.com/watch?v=n-2FxCkzvsw&feature=channel
The next one is with her Grandad O Shea (this is short and sweet) but I was holding the camera sideways so it's hard to watch properly unless you can turn your screen sideways. Sorry! But you can still hear the laughing that Ashling is doing!
http://www.youtube.com/watch?v=A_dqBFhLuDw&feature=channel
And this one is with her cousins, David and Daniel Neville, who are trying to watch StarWars in peace! (this is a bit longer and not very exciting, but cute)
http://www.youtube.com/watch?v=_QNOIyahp4E&feature=channel
I have a few more videos that I will put on utube over the next few days. Thanks for your interest! xxx
Monday, January 19, 2009
Belated Happy New Year!
After a great break from medical appointments over Christmas, we are feeling quite relaxed in this house. Ashling is continuing to love her independence, bum shuffling around the floor, free from oxygen prongs etc. She's trying really hard to talk, though most of it is gobbeldegook. "Dad Dad" still seems to be her favourite, with 'Dugga Dugga" a close second position. I rarely get a look in, despite any amount of "Mam Mam" brainwashing that's done! No appreciation whatsoever! Ha ha.
Otherwise, nothing much has changed though she's exploring more food than ever...just licking it mind you, but still this is progress!
I am attaching a recent video of her - hope you enjoy it.
Thanks for taking the time to read this. x
http://nz.youtube.com/watch?v=Df0QVJYNbE4&feature=channel_page
Otherwise, nothing much has changed though she's exploring more food than ever...just licking it mind you, but still this is progress!
I am attaching a recent video of her - hope you enjoy it.
Thanks for taking the time to read this. x
http://nz.youtube.com/watch?v=Df0QVJYNbE4&feature=channel_page
Friday, December 26, 2008
No more oxygen!!!!!!
Since the 23rd of December, Ashling has no longer needed oxygen AT ALL!!!!!!
We are hoping and praying that she will not need it again. As long as she stays well and doesn't get sick in the next few months, she should be able to stay off it.
We are absolutely thrilled!!! Santa came early this year! Woo Hoo!!!
We are hoping and praying that she will not need it again. As long as she stays well and doesn't get sick in the next few months, she should be able to stay off it.
We are absolutely thrilled!!! Santa came early this year! Woo Hoo!!!
Wednesday, December 10, 2008
Nearly Christmas and nearly 14 months!
Well, hope you are all getting excited about Christmas being round the corner. We certainly are! It's so great having Ashling's first "normal" Christmas.....at home! Can't believe that she was in hospital this time last year. It feels like a lifetime ago.
Things are really good here. Ashling has become a much happier child in the past couple of months and is developing a great little personality. We are really enjoying her! She's really starting to make her presence known these days and is becoming a right little chatterbox. No idea where that's coming from!!!!!!! (Ger I spose!)
In relation to her oxygen, she still needs it at night but she doesn't need it at all during the day anymore, which makes things so easy for us. She's so much more portable! We're hoping that she won't need it for much longer at night either cause she's getting much stronger. hmmm......Fingers crossed.
Think one of the reasons that she's so much happier is because she's getting more mobile. She loves bum shuffling around in circles. The faster the surface, the faster she goes; it's hilarious to watch! I will put a video of her doing it on utube in the next few days.
Hopefully she'll start moving forwards and backwards one of these days (and then I'll regreat these words!!!). She also spends time in a standing frame everyday now, which is really helping to strengthen her legs. She still buckles at the knees a bit when you try to put her standing independently but she's taking a bit of her own weight now, which is great.
Unfortunately, feeding Ashling is still a major issue but one which has improved a wee bit. She still only takes part of her meal herself and we have to put the majority of it down her tube. We're hoping to start pulling back on her meals in the New Year in order to make her hungrier. As you know, it's been a real battle between trying to get her to eat, but also making sure that she grows cause she's been so slow to gain weight. However, despite the fact that she's getting plenty of food and milk, she's still not putting on much/any weight. So we're starting to think that we might as well just go for it cause she' s not really growing much anyway. We will just need to make sure that she doesn't loose much weight cause she's got very little reserve. Please say a prayer for her as this is so important to us all - to get Ashling to eat properly and to get rid of the bloomin tube in her tummy, which has caused her a lot of discomfort.
Looks like she'll always be a littlie but who cares! You know what they say - "Good things come in small packages!".
Generally, things are much much better. We are really glad that the year is coming to a close and hope that 2009 will be a better year for our family. It's very exciting to be finishing the year, feeling so positive and happy about things. Ashling is a delight and makes us laugh every day now.
Well Merry Christmas to you all. Thanks for taking the time to read this.
Lots of love Always, Car, Ger and Ash xxxxx
Things are really good here. Ashling has become a much happier child in the past couple of months and is developing a great little personality. We are really enjoying her! She's really starting to make her presence known these days and is becoming a right little chatterbox. No idea where that's coming from!!!!!!! (Ger I spose!)
In relation to her oxygen, she still needs it at night but she doesn't need it at all during the day anymore, which makes things so easy for us. She's so much more portable! We're hoping that she won't need it for much longer at night either cause she's getting much stronger. hmmm......Fingers crossed.
Think one of the reasons that she's so much happier is because she's getting more mobile. She loves bum shuffling around in circles. The faster the surface, the faster she goes; it's hilarious to watch! I will put a video of her doing it on utube in the next few days.
Hopefully she'll start moving forwards and backwards one of these days (and then I'll regreat these words!!!). She also spends time in a standing frame everyday now, which is really helping to strengthen her legs. She still buckles at the knees a bit when you try to put her standing independently but she's taking a bit of her own weight now, which is great.
Unfortunately, feeding Ashling is still a major issue but one which has improved a wee bit. She still only takes part of her meal herself and we have to put the majority of it down her tube. We're hoping to start pulling back on her meals in the New Year in order to make her hungrier. As you know, it's been a real battle between trying to get her to eat, but also making sure that she grows cause she's been so slow to gain weight. However, despite the fact that she's getting plenty of food and milk, she's still not putting on much/any weight. So we're starting to think that we might as well just go for it cause she' s not really growing much anyway. We will just need to make sure that she doesn't loose much weight cause she's got very little reserve. Please say a prayer for her as this is so important to us all - to get Ashling to eat properly and to get rid of the bloomin tube in her tummy, which has caused her a lot of discomfort.
Looks like she'll always be a littlie but who cares! You know what they say - "Good things come in small packages!".
Generally, things are much much better. We are really glad that the year is coming to a close and hope that 2009 will be a better year for our family. It's very exciting to be finishing the year, feeling so positive and happy about things. Ashling is a delight and makes us laugh every day now.
Well Merry Christmas to you all. Thanks for taking the time to read this.
Lots of love Always, Car, Ger and Ash xxxxx
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