Ash is doing well, still eating very little but she seems to be perfectly happy and healthy so we have stopped worrying about her weight.
You should enjoy the following video....it's very cute!
http://www.youtube.com/watch?v=jn2MWyldPjg
Lots of love x
Hello again
Friday, June 26, 2009
Friday, June 12, 2009
Botox is working!
Well it looks like the botox injections are working as Ashling's legs are responding nicely. The bend has decreased in both legs! We are really pleased. Only drawback is that Ashling's Orthopaedic Surgeon wants her to wear the splints 24/7 for 3 months now, instead of 3 weeks! We are negotiating it at the moment as her Physio thinks that this may be too long and that Ash will lose a lot of the strength that she has built up in her legs. We'll have to wait and see.
Ash has been incredibly tolerant of the splints, she has just found new ways of doing things.
Her eating and drinking is still our biggest challenge - we're not really sure how she is surviving as she seems to eat like a sparrow! Anyhow, she'll get there but let's just say, she'll never be a very big person!
I took a few videos the other night of her showing some of her party tricks. She was just about to go to bed and so was a bit tired but they are still cutish.
http://www.youtube.com/watch?v=dGLzblxbCgE
In this one she was getting tired but she still enjoyed her songs - a little bit!
http://www.youtube.com/watch?v=e0yzR26DkZ8
That's all for now. Thanks for taking the interest to look at this. Lots of love xxx
Ash has been incredibly tolerant of the splints, she has just found new ways of doing things.
Her eating and drinking is still our biggest challenge - we're not really sure how she is surviving as she seems to eat like a sparrow! Anyhow, she'll get there but let's just say, she'll never be a very big person!
I took a few videos the other night of her showing some of her party tricks. She was just about to go to bed and so was a bit tired but they are still cutish.
http://www.youtube.com/watch?v=dGLzblxbCgE
In this one she was getting tired but she still enjoyed her songs - a little bit!
http://www.youtube.com/watch?v=e0yzR26DkZ8
That's all for now. Thanks for taking the interest to look at this. Lots of love xxx
Monday, June 1, 2009
Botox Done!
Well Ash had her botox injections and her hamstrings have been somewhat paralysed in an effort to relax the back of her legs. As there is still a bend in both knees stopping her from straighening her legs, the aim of the botox is to allow the physio to stretch her legs and try to get some of the bend to release over time. She's now wearing splints 24/7, which is pretty hard on her cause she can't bum shuffle around the place or ride around on her bike. She was very frustrated for a day or two but it's amazing how much she's already adapted to them. She can now bum shuffle a little bit and she's being incredibly tolerant of them. She'll probably have to wear them for about a month. Hopefully by the end of that time, her legs will be a bit straighter.
In regards to her eating, she hasn't made much progress unfortunately. But hopefully with time, she will take more interest and start chewing food etc.
Besides all of that she is doing wonderfully and is SO much fun at the moment!
I will update with some photos and videos next week.
Cheers, Car x
In regards to her eating, she hasn't made much progress unfortunately. But hopefully with time, she will take more interest and start chewing food etc.
Besides all of that she is doing wonderfully and is SO much fun at the moment!
I will update with some photos and videos next week.
Cheers, Car x
Saturday, May 9, 2009
May 6th: 6 weeks down of Ash not being fed by tube
What a little legend our munchkin is!
Ashling is continuing to do well without tube feeding. She is still just learning how to eat so we can't really count food much in her daily calorie intake (unless you can quantify the salt off a cracker!) but she is experimenting more and more every day and she's getting braver with what goes into her mouth (though most of comes back out again). she's loving her new confidence though. In the past if she put someting in her mouth, she would panic and cry, resulting in us trying to yank it out or she would get sick and bring up a lot more than the little piece that had just offended her! Now she has great control, she puts it in, plays with it, tries biting it sometimes and then confidently spits it out again. The next stage has to be that she'll decide to devour it - well I certainly hope so anyway!!
She drinks about 500 mls of high energy formula per day and some water and that's what's she's surviving on. She has lost about half a kilo overall and is sustaining that (she's about 7.5 kilos) but hopefully in the next month or two she'll start putting on some weight again.
Otherwise, she was supposed to have her botox injections this week but they were cancelled due to being understaffed in theatre. We got a call on the morning - very frustrating. But we got a new date, Mon 18th of May so fingers crossed that that'll go ahead and be successful. They are hoping that if this works properly, i.e temporarily paralyses her hamstrings and gets her quads to work, they'll get a good stretch in her legs and put casts on again for another few weeks. If the overall process goes as well as they hope, she might be able to avoid knee surgery. We can only hope!
On a lighter note, Ash is so much fun at the moment. We are REALLY enjoying her. She cannot pass a person on the street or in the supermarket without saying "Hi Ya", "Hi Ya" until they salute her. She also insists on playing "Hidie...Boo" with complete strangers. What a laugh. Dunno where we got her, Lots of Love Car xxxxx
Caroline forgot to mention that Ashlings favourite game is what every she is playing with, be it a toy or a shoe, she puts it up to her ear and says hi, hi ya, immitating her ........guess who!!!!! I have to agree though she is great fun at the moment and is so enjoyable.
I'll write more next time.......Ger
Ashling is continuing to do well without tube feeding. She is still just learning how to eat so we can't really count food much in her daily calorie intake (unless you can quantify the salt off a cracker!) but she is experimenting more and more every day and she's getting braver with what goes into her mouth (though most of comes back out again). she's loving her new confidence though. In the past if she put someting in her mouth, she would panic and cry, resulting in us trying to yank it out or she would get sick and bring up a lot more than the little piece that had just offended her! Now she has great control, she puts it in, plays with it, tries biting it sometimes and then confidently spits it out again. The next stage has to be that she'll decide to devour it - well I certainly hope so anyway!!
She drinks about 500 mls of high energy formula per day and some water and that's what's she's surviving on. She has lost about half a kilo overall and is sustaining that (she's about 7.5 kilos) but hopefully in the next month or two she'll start putting on some weight again.
Otherwise, she was supposed to have her botox injections this week but they were cancelled due to being understaffed in theatre. We got a call on the morning - very frustrating. But we got a new date, Mon 18th of May so fingers crossed that that'll go ahead and be successful. They are hoping that if this works properly, i.e temporarily paralyses her hamstrings and gets her quads to work, they'll get a good stretch in her legs and put casts on again for another few weeks. If the overall process goes as well as they hope, she might be able to avoid knee surgery. We can only hope!
On a lighter note, Ash is so much fun at the moment. We are REALLY enjoying her. She cannot pass a person on the street or in the supermarket without saying "Hi Ya", "Hi Ya" until they salute her. She also insists on playing "Hidie...Boo" with complete strangers. What a laugh. Dunno where we got her, Lots of Love Car xxxxx
Caroline forgot to mention that Ashlings favourite game is what every she is playing with, be it a toy or a shoe, she puts it up to her ear and says hi, hi ya, immitating her ........guess who!!!!! I have to agree though she is great fun at the moment and is so enjoyable.
I'll write more next time.......Ger
Tuesday, April 14, 2009
14th April, 2009
Well, it's 2 weeks today since we gave Ashling a proper tube feed. Very exciting stuff!
We've had to give her water and medicine through it on some occasions but overall, she's doing quite well on her own. She's still not eating much but she is definitely more interested than ever and has managed a few little bits. She was slowing down a bit last week and we were getting worried but so far she's doing well this week. They say it takes 3-4 weeks for the penny to drop properly and for her appetite to stabilise. One thing she likes for sure is baked beans (like her Daddy) and icecream (like her Mammy); she managed about a tablespoon of baked beans the other evening, which was a major breakthorough and we've been giving her a little icecream most days which she's starting to really like. But as with Ashling's usual trend, nothing changes overnight and she's continuing this progress in baby steps!
It's absolutely fantastic being able to give her the control about when and what she eats. She tells us very clearly when she wants a drink or wants to lick some food (usually salty food like crisps/crackers etc). We let her have whatever she wants, as this is how we've been advised for this transition period. It's like demand breast feeding a baby. After a year and a half of having no input into whether or not she eats, Ashling needs to understand that she can ask for food and her request will be adhered to, irrespective of her choice of food/drink etc (within reason!).
I was really embarrassed the other day cause as I said before, Ashling loves to lick salty food, and hey we're not going to stop her cause then she drinks more! (and that's where she's getting all her calories at the moment). Anyway, I take Ashling to PlayCentre on Wed morning and the kids were having morning tea. I took out Ashling's lunchbox, which is like a fishing tackle box with heaps of sections. In each section, there was some sort of food (namely popcorn, pringles, crackers, fruit, bread and pasta). A little 4 year old sitting near us looked into Ash's lunchbox and said out loud to all the parents and kids "Look at Ashling's lunchbox - it's all junk food!!!). I was absolutely mortified and found myself justifying myself to a 4 year old, telling her to note that Ashling also had fruit, pasta etc. Looking back, it really was hilarious!
These are the times when I know I could explain a few things, but can't be bothered!
Will report back in another week. Cheers!
We've had to give her water and medicine through it on some occasions but overall, she's doing quite well on her own. She's still not eating much but she is definitely more interested than ever and has managed a few little bits. She was slowing down a bit last week and we were getting worried but so far she's doing well this week. They say it takes 3-4 weeks for the penny to drop properly and for her appetite to stabilise. One thing she likes for sure is baked beans (like her Daddy) and icecream (like her Mammy); she managed about a tablespoon of baked beans the other evening, which was a major breakthorough and we've been giving her a little icecream most days which she's starting to really like. But as with Ashling's usual trend, nothing changes overnight and she's continuing this progress in baby steps!
It's absolutely fantastic being able to give her the control about when and what she eats. She tells us very clearly when she wants a drink or wants to lick some food (usually salty food like crisps/crackers etc). We let her have whatever she wants, as this is how we've been advised for this transition period. It's like demand breast feeding a baby. After a year and a half of having no input into whether or not she eats, Ashling needs to understand that she can ask for food and her request will be adhered to, irrespective of her choice of food/drink etc (within reason!).
I was really embarrassed the other day cause as I said before, Ashling loves to lick salty food, and hey we're not going to stop her cause then she drinks more! (and that's where she's getting all her calories at the moment). Anyway, I take Ashling to PlayCentre on Wed morning and the kids were having morning tea. I took out Ashling's lunchbox, which is like a fishing tackle box with heaps of sections. In each section, there was some sort of food (namely popcorn, pringles, crackers, fruit, bread and pasta). A little 4 year old sitting near us looked into Ash's lunchbox and said out loud to all the parents and kids "Look at Ashling's lunchbox - it's all junk food!!!). I was absolutely mortified and found myself justifying myself to a 4 year old, telling her to note that Ashling also had fruit, pasta etc. Looking back, it really was hilarious!
These are the times when I know I could explain a few things, but can't be bothered!
Will report back in another week. Cheers!
Friday, April 3, 2009
Success!!!!!
Tis with a glass of vino in hand that I write that Ashling is getting there!!! The progress she's making is phenomonal!
We stopped her last tube feed 3 days ago, following excellent advice that we've been getting from the Feeding Clinic in Austria. Since then she has started really increasing her fluid intake and her drinking has become so much more efficient. She still hasn't really managed to eat much but she's trying incredibly hard and tries something new each day. She is so careful though and can only successfully manage bite and dissolve type of food at the moment. She's loving being in charge of it all though. After a year and a half of getting tube fed, irrespective of whether or not she's wanted it, Ash is now in the driver's seat and she really likes that. She still needs a lot of encouragement and gets very grumpy these days, mostly because she's hungry but she doesn't recognise that feeling.
Overall, we are absolutely thrilled with her progress but she still has a long, long way to go....
Thanks a million for all the ongoing prayers and support xxx
Ps: Took Ash out for a while this arvo and I just couldn't believe how easy it was to bring food for her - took a drink and some crackers for her (to lick!). No tube extention, tape, 60ml syringe, bottle, pureed food , formula milk, sterile water, 10ml syringe.....No, just a drink and a snack! WOO HOO!!!!! Bring it on!
We stopped her last tube feed 3 days ago, following excellent advice that we've been getting from the Feeding Clinic in Austria. Since then she has started really increasing her fluid intake and her drinking has become so much more efficient. She still hasn't really managed to eat much but she's trying incredibly hard and tries something new each day. She is so careful though and can only successfully manage bite and dissolve type of food at the moment. She's loving being in charge of it all though. After a year and a half of getting tube fed, irrespective of whether or not she's wanted it, Ash is now in the driver's seat and she really likes that. She still needs a lot of encouragement and gets very grumpy these days, mostly because she's hungry but she doesn't recognise that feeling.
Overall, we are absolutely thrilled with her progress but she still has a long, long way to go....
Thanks a million for all the ongoing prayers and support xxx
Ps: Took Ash out for a while this arvo and I just couldn't believe how easy it was to bring food for her - took a drink and some crackers for her (to lick!). No tube extention, tape, 60ml syringe, bottle, pureed food , formula milk, sterile water, 10ml syringe.....No, just a drink and a snack! WOO HOO!!!!! Bring it on!
Friday, March 27, 2009
Doing ok so far.....but a long way to go!
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
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
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