Hi There, Ash is doing much better thank God. She has gotten used to having the casts on and in general, her form has improved greatly. She's having the last cast change next Friday and the Surgeons will take the wires out of her feet. Then she will have to wear the new casts for about 6 more weeks. Can't wait to be done with it to be honest - all of these appointments and anaesthetics have been way too close together for our liking. Anyway, these are a couple of videos, nothing too exciting, but they will give you an idea of where she's at at the moment.
1. Playing with her cousin, David Neville
http://www.youtube.com/watch?v=FtBSfFZraJQ
2. Our friend Rohan playing with Ash
http://www.youtube.com/watch?v=E-d-ORfivhc
3. Being entertained yet again by cousin David
http://www.youtube.com/watch?v=yzsBQTJ76iM
4. Ashling got a new hospital type of bed:
http://www.youtube.com/watch?v=ZFwa9XQkKUE
5. Cousin Daniel reading/singing stories to Ash and David
http://www.youtube.com/watch?v=luX00AlelaE
6. More stories..
http://www.youtube.com/watch?v=YI2JibIXhmI
That's all for now. Will be in touch after her surgery next Friday. xxx
Hello again
Saturday, October 3, 2009
Sunday, September 6, 2009
Monday, 7th September
One Foot Surgery down......
Well Ash had the big surgery on her rockerbottom feet. It took nearly 8 hours!
Anyhow, it seems like everything went as it should have in theatre but there were a lot of problems with pain relief afterwards. A leaky epidural was taken out after 24 hours and Ash was put on morphine, which didn't suit her at all. She ended up highly distressed and short of breath and it was all quite traumatic for her to be honest. But 4 days post-op, we took her home, where she's a lol happier than in hospital. It hasn't been easy though. She still has a lot of discomfort and is totally frustrated by her lack of mobility (as the casts go from her toes to her groin). So her bum-shuffling, bike, rocking horse....all modes of transport are not possible at the moment. In fact, the time in casts seems to be crawling so far! But alas in the big scheme of things, I'm sure we'll all look back on this time and it will seem like a drop in the ocean of Ashling's life to date!
Ash has to go back to theatre this Thursday for the 2nd part of this procedure. The surgeons will remove the casts, tighten up the wires in her feet that are holding the new shape of her bones, and then put new casts on. Then it will be 4 more weeks in these, until the next and final change. (after which the wires will be removed but casts will remain for 6 more weeks).
So more prayers needed for Thursday....pleeeeaaaase! Will keep you posted.
Thanks, as always! xxxx
PS: This is a cute little video of Ger and Ash playing the drums a few weeks ago when we were away for a weekend. The picture is a bit dark and blurry though.
http://www.youtube.com/watch?v=A1lsqKT3b9Q
Well Ash had the big surgery on her rockerbottom feet. It took nearly 8 hours!
Anyhow, it seems like everything went as it should have in theatre but there were a lot of problems with pain relief afterwards. A leaky epidural was taken out after 24 hours and Ash was put on morphine, which didn't suit her at all. She ended up highly distressed and short of breath and it was all quite traumatic for her to be honest. But 4 days post-op, we took her home, where she's a lol happier than in hospital. It hasn't been easy though. She still has a lot of discomfort and is totally frustrated by her lack of mobility (as the casts go from her toes to her groin). So her bum-shuffling, bike, rocking horse....all modes of transport are not possible at the moment. In fact, the time in casts seems to be crawling so far! But alas in the big scheme of things, I'm sure we'll all look back on this time and it will seem like a drop in the ocean of Ashling's life to date!
Ash has to go back to theatre this Thursday for the 2nd part of this procedure. The surgeons will remove the casts, tighten up the wires in her feet that are holding the new shape of her bones, and then put new casts on. Then it will be 4 more weeks in these, until the next and final change. (after which the wires will be removed but casts will remain for 6 more weeks).
So more prayers needed for Thursday....pleeeeaaaase! Will keep you posted.
Thanks, as always! xxxx
PS: This is a cute little video of Ger and Ash playing the drums a few weeks ago when we were away for a weekend. The picture is a bit dark and blurry though.
http://www.youtube.com/watch?v=A1lsqKT3b9Q
Wednesday, August 19, 2009
Wed, 19th August, 09
Just a few videos and recent photos of Ash, showing off her shiner! She had a nasty fall off her bike and got a black eye and a bruised forehead. Didn't bother her in the least though - think I was more upset about it than she was!
The videos aren't anything too exciting but they'll give you an idea where she's at right now. Cheers x
1. Getting a kiss off her on her bike
http://www.youtube.com/watch?v=-uOaFvB9TNc
2. Dad reading to her while she tries to wear tiny glasses belonging to Mr PotatoHead! Our studious little girl....not!
http://www.youtube.com/watch?v=fXJ6SNXjjgE
3. Ash being serenaded by her cousin Katie!
http://www.youtube.com/watch?v=MKuKbh6oTHQ
4. Watching Barney while chilling out on my rocking horse - a bit boring.
http://www.youtube.com/watch?v=yPzyxzewg-0
5. Ash getting ready for bed...NOT!
http://www.youtube.com/watch?v=BEGDARsC3uU
6. Ash and Ger messing in her room before bedtime.
http://www.youtube.com/watch?v=OpPymkiW_HU
Cheers,
Lots of love, Car and Ger x
The videos aren't anything too exciting but they'll give you an idea where she's at right now. Cheers x
1. Getting a kiss off her on her bike
http://www.youtube.com/watch?v=-uOaFvB9TNc
2. Dad reading to her while she tries to wear tiny glasses belonging to Mr PotatoHead! Our studious little girl....not!
http://www.youtube.com/watch?v=fXJ6SNXjjgE
3. Ash being serenaded by her cousin Katie!
http://www.youtube.com/watch?v=MKuKbh6oTHQ
4. Watching Barney while chilling out on my rocking horse - a bit boring.
http://www.youtube.com/watch?v=yPzyxzewg-0
5. Ash getting ready for bed...NOT!
http://www.youtube.com/watch?v=BEGDARsC3uU
6. Ash and Ger messing in her room before bedtime.
http://www.youtube.com/watch?v=OpPymkiW_HU
Cheers,
Lots of love, Car and Ger x
Monday, August 10, 2009
A lovely story...
People have often asked me what it's like having a child with a disability. Someone sent me this story recently and it describes perfectly what it's like. Have a read below:
Emily Kingsley said, “ I’m often asked to describe the experience of raising a child with a disability and to try to help people who have not shared that unique experience to understand it and to imagine how it would feel. It’s like this: When you’re going to have a baby, it’s like planning a fabulous vacation to Italy. You buy a bunch of guidebooks and make your wonderful plans. You’re going to see the coliseum, the Sistine chapel, the gondolas. You may learn some handy phrases in Italian and it’s very exciting. After several months of preparation and anticipation, the day finally arrives. You pack your bags and off you go to Italy. Several hours later, the plane lands. The stewardess says, ‘Welcome to Holland.’ ‘Holland?’ you say, ‘I signed up for Italy. I’m supposed to be in Italy. All my life I have dreamed of going to Italy.’ But there’s been a change in flight plans and they’ve landed in Holland and there you must stay. The important thing to remember is they haven’t taken you to a horrible, disgusting, filthy place filled with pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks and you must learn a whole new language and you must meet a whole new group of people that you would never have met before. It’s just a different place. It’s slower paced than Italy and it’s less flashy than Italy. But after you have been there for a while and you catch your breath, you begin to look around and you begin to notice that Holland has windmills. And Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy and bragging about what a wonderful time they’ve had there. And for the rest of your life you’ll say, ‘Yes, that is where I was supposed to go. At least that is what I had planned.’ And the pain of that experience will never, ever, go away. The loss of that dream is a very significant loss. But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy those very special, very lovely things about Holland. “
Emily Kingsley said, “ I’m often asked to describe the experience of raising a child with a disability and to try to help people who have not shared that unique experience to understand it and to imagine how it would feel. It’s like this: When you’re going to have a baby, it’s like planning a fabulous vacation to Italy. You buy a bunch of guidebooks and make your wonderful plans. You’re going to see the coliseum, the Sistine chapel, the gondolas. You may learn some handy phrases in Italian and it’s very exciting. After several months of preparation and anticipation, the day finally arrives. You pack your bags and off you go to Italy. Several hours later, the plane lands. The stewardess says, ‘Welcome to Holland.’ ‘Holland?’ you say, ‘I signed up for Italy. I’m supposed to be in Italy. All my life I have dreamed of going to Italy.’ But there’s been a change in flight plans and they’ve landed in Holland and there you must stay. The important thing to remember is they haven’t taken you to a horrible, disgusting, filthy place filled with pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks and you must learn a whole new language and you must meet a whole new group of people that you would never have met before. It’s just a different place. It’s slower paced than Italy and it’s less flashy than Italy. But after you have been there for a while and you catch your breath, you begin to look around and you begin to notice that Holland has windmills. And Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy and bragging about what a wonderful time they’ve had there. And for the rest of your life you’ll say, ‘Yes, that is where I was supposed to go. At least that is what I had planned.’ And the pain of that experience will never, ever, go away. The loss of that dream is a very significant loss. But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy those very special, very lovely things about Holland. “
Thursday, August 6, 2009
Well recovered.....
Ashling has fully recovered from her bug and her oxygen levels are back to normal. She is also eating and drinking the same as before (if not a little better!). We are absolutely thrilled with her and thoroughly enjoying every day with her and her roguish ways!
The other news is that she is going to have a baby sister or brother around Christmas time. Yes, I'm pregnant and due on Dec 21st. We had intended on doing IVF so that the chances of having a baby with Escobar syndrome could be minimised but then we decided to just go for it and pray LOTS! Anyway, the wonderful news is that we have had tests done and the baby does not carry the gene for escobar syndrome. So hopefully we will have a healthy baby for Christmas. Woo Hoo. To say that we are over the moon is an understatement!
As always, thanks a million for taking the time and interest in reading this.
Lots of love, Car, Ger and ash x0x0x0
The other news is that she is going to have a baby sister or brother around Christmas time. Yes, I'm pregnant and due on Dec 21st. We had intended on doing IVF so that the chances of having a baby with Escobar syndrome could be minimised but then we decided to just go for it and pray LOTS! Anyway, the wonderful news is that we have had tests done and the baby does not carry the gene for escobar syndrome. So hopefully we will have a healthy baby for Christmas. Woo Hoo. To say that we are over the moon is an understatement!
As always, thanks a million for taking the time and interest in reading this.
Lots of love, Car, Ger and ash x0x0x0
Tuesday, July 21, 2009
Minor Set-Back
Well the ole winter cold has finally taken its toll on our little munchkin.
About 2 weeks ago, she picked up a nasty virus and just when we thought she'd shaken the worst of it, she got a chesty cough which she just couldn't handle. Her oxygen saturation levels dropped and we ended up back in hospital for 4 days. We've been at home now for a couple of days and though she still has a cough, she is a lot better and is starting to get her energy back.
Unfortunately, it was a wee step back for Ash because she needed oxygen to recover, which was very disappointing for us since she's been off it now for 7 months. We also had to resort to feeding her through her Mic-Key button cause she refused to eat or drink anything. Hopefully we'll have her eating and drinking independent of her tube in another week or so. At the moment she's still quite weak after being sick, and she is quite dehydrated after having the runs for about 8 days so we'll keep giving her fluids down the tube for now.
The other news regarding Ash's health is that we finally have a date to get her foot surgery done. She is getting both feet operated on at the same time on August 27th so please say a prayer for her then. It will be a pretty major surgery, correcting the shape and structure of her rocker-bottom feet, and she will have wire in her feet for a while after, securing the bones into their new position. She will also need casts for about 12 weeks post-surgery but hopefully she'll have them off for Christmas.
Well that's about it for now. Ashling is going through a real cuddly phase at the mo - which we're lovin! She could kiss and cuddle us all day if we'd let her. It's great!
About 2 weeks ago, she picked up a nasty virus and just when we thought she'd shaken the worst of it, she got a chesty cough which she just couldn't handle. Her oxygen saturation levels dropped and we ended up back in hospital for 4 days. We've been at home now for a couple of days and though she still has a cough, she is a lot better and is starting to get her energy back.
Unfortunately, it was a wee step back for Ash because she needed oxygen to recover, which was very disappointing for us since she's been off it now for 7 months. We also had to resort to feeding her through her Mic-Key button cause she refused to eat or drink anything. Hopefully we'll have her eating and drinking independent of her tube in another week or so. At the moment she's still quite weak after being sick, and she is quite dehydrated after having the runs for about 8 days so we'll keep giving her fluids down the tube for now.
The other news regarding Ash's health is that we finally have a date to get her foot surgery done. She is getting both feet operated on at the same time on August 27th so please say a prayer for her then. It will be a pretty major surgery, correcting the shape and structure of her rocker-bottom feet, and she will have wire in her feet for a while after, securing the bones into their new position. She will also need casts for about 12 weeks post-surgery but hopefully she'll have them off for Christmas.
Well that's about it for now. Ashling is going through a real cuddly phase at the mo - which we're lovin! She could kiss and cuddle us all day if we'd let her. It's great!
Friday, June 26, 2009
Ash - nearly 20 months old
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
You should enjoy the following video....it's very cute!
http://www.youtube.com/watch?v=jn2MWyldPjg
Lots of love x
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