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!!!
Hello again
Friday, December 26, 2008
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
Thursday, November 6, 2008
Forest Gump Made it!
Well, our legend of a man, Ger, managed to complete the marathon in style. He even knocked about 15 minutes off the time he was expecting. He ran in just under 3 and a half hours. Amazing.
It was a very exciting morning altogether. I'm not sure who was more excited. You'd swear that I was doing it cause I was so nervous and excited. It all went really well. I even ran a bit of it myself, trying to keep up with him when I was 'watering' him. I forgot about the fact that he wasn't going to stop for a chat and a drink so I had no choice but to run with him. The things you have to do to get quality time with your hubby! Thankfully I had my runners on. Ha ha.
Anyway, he's quite chuffed with himself and managed to raise the bones of three thousand dollars for Ronald McDonald House so it was success all round. Thanks a million to everyone for their generous support. We are also doing a volunteer dinner at Ron Mc Don House on Nov 22nd for about 120 people ( all the families who have loved ones in the hospital). We've wanted to do it for a while but it just didn't work out until now. But we're ready to go full steam ahead now, with the help of our family and friends. When we were staying there, other families and companies came in and made dinner for everyone and it was a Godsent as we were so tired after the day at the hospital. If any of you ever want to do something like this, let me know and I can give you the details of how you go about it. Lots of companies do it as a team building experience. How cool would it be to do that and help so many people at the same time?
Now to the little person that you've wanted to read about......our little munchkin........Ashling is doing quite well. She's still struggling a bit since her bout of pneumonia, which was over a month ago. Apparently it can take about 6 weeks to get rid of completely. She's still got a runny nose, a cough and even more mucus than usual (if that's possible). However, despite that, she's in great form and is developing such a cute but stubborn personality. I laugh with her everyday now....something I'd never really experienced for the last year to be honest.
We decided not to go ahead with having a birthday party for her as she has been too up and down lately. As it turned out, it was a good call cause she was sick all day on her birthday. She hasn't really made a lot of progress physically though she's much stronger and can sit up for quite a while on her own now. Developmentally, she seems to be doing well. She's certainly got
us wrapped round her finger. I have put some new videos on utube so that you can see what she's up to lately.
Have a look at some of these recent videos if you'd like to see what she's up to these days. Don't forget to let them load first i.e let the orange line run across the screen to the end before you play it or else it will keep pausing on you. Or just press play, then pause and wait til the line goes across under the picture. It'll just take 2 to 3 mins to upload. Hope you enjoy them. Cheers
http://www.youtube.com/watch?v=joLikJU6fvw
http://www.youtube.com/watch?v=OFVGi3hdFLY
http://www.youtube.com/watch?v=ksP7BU-Pr98
This an old video of Ashling and her Nana Collins, which is quite cute.
http://www.youtube.com/watch?v=TKx1p0zoipc
Take Care.
Thanks for keeping up with Ashling's progress xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
It was a very exciting morning altogether. I'm not sure who was more excited. You'd swear that I was doing it cause I was so nervous and excited. It all went really well. I even ran a bit of it myself, trying to keep up with him when I was 'watering' him. I forgot about the fact that he wasn't going to stop for a chat and a drink so I had no choice but to run with him. The things you have to do to get quality time with your hubby! Thankfully I had my runners on. Ha ha.
Anyway, he's quite chuffed with himself and managed to raise the bones of three thousand dollars for Ronald McDonald House so it was success all round. Thanks a million to everyone for their generous support. We are also doing a volunteer dinner at Ron Mc Don House on Nov 22nd for about 120 people ( all the families who have loved ones in the hospital). We've wanted to do it for a while but it just didn't work out until now. But we're ready to go full steam ahead now, with the help of our family and friends. When we were staying there, other families and companies came in and made dinner for everyone and it was a Godsent as we were so tired after the day at the hospital. If any of you ever want to do something like this, let me know and I can give you the details of how you go about it. Lots of companies do it as a team building experience. How cool would it be to do that and help so many people at the same time?
Now to the little person that you've wanted to read about......our little munchkin........Ashling is doing quite well. She's still struggling a bit since her bout of pneumonia, which was over a month ago. Apparently it can take about 6 weeks to get rid of completely. She's still got a runny nose, a cough and even more mucus than usual (if that's possible). However, despite that, she's in great form and is developing such a cute but stubborn personality. I laugh with her everyday now....something I'd never really experienced for the last year to be honest.
We decided not to go ahead with having a birthday party for her as she has been too up and down lately. As it turned out, it was a good call cause she was sick all day on her birthday. She hasn't really made a lot of progress physically though she's much stronger and can sit up for quite a while on her own now. Developmentally, she seems to be doing well. She's certainly got
us wrapped round her finger. I have put some new videos on utube so that you can see what she's up to lately.
Have a look at some of these recent videos if you'd like to see what she's up to these days. Don't forget to let them load first i.e let the orange line run across the screen to the end before you play it or else it will keep pausing on you. Or just press play, then pause and wait til the line goes across under the picture. It'll just take 2 to 3 mins to upload. Hope you enjoy them. Cheers
http://www.youtube.com/watch?v=joLikJU6fvw
http://www.youtube.com/watch?v=OFVGi3hdFLY
http://www.youtube.com/watch?v=ksP7BU-Pr98
This an old video of Ashling and her Nana Collins, which is quite cute.
http://www.youtube.com/watch?v=TKx1p0zoipc
Take Care.
Thanks for keeping up with Ashling's progress xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Sunday, October 12, 2008
Nearly 1 Year's Old!!!
Sorry for the silence for a couple of months. As always, things have been quite eventful here. Our little munchkin likes to keep us on her toes.
Where to start??? It's been pretty full on time since Ashling got the Mickey Button in her tummy. For some reason the first week was great, which was when I wrote the last blog. Then things went steadily downhill for a while and I hadn't the heart to write another blog, desperately waiting for things to improve. But that's really only the case now.
Ashling has had quite a few problems with her mickey button. Her mucus (reflux) came back in force, plus she's had quite a few infections in her surgical wound (the opening of the tube) and she's had a lot of problems with extra tissue building up around the hole. This has all been quite painful for Ashling and a pain in the butt for us because we've had to clean and dress it about 3 times a day since she got it (and still have to). She's also still very screamish about being on her tummy because of this discomfort so we have had a standstill in her physical development in relation to rolling, pushing up with her arms etc.
Then we decided it was time for a holiday so we went to Australia. It was fantastic to catch up with really close friends and Ashling was really good during the holiday, very easy to take away, despite the oxygen etc. We were even able to take her off the oxygen most days for a substantial amount of time and she coped very well. However, somewhere along the way (maybe even on the plane), she picked up a nasty bug. So the morning after we arrived home, we had to take her the Dr. That was 2 weeks ago and she's been very sick since, with what turned out to be a bout of pneumonia. We had to go to hospital for 4 days as she was very weak and needed IV antibiotics and extra oxygen. But she's doing much much better over the last 48 hours. Hence, I've decided to finally update the blog!
Can't believe it's only a couple of weeks to her birthday. What a year! She's beginning to get quite curious about the world but also a bit bored just being at home with me. But we'll have to keep her wrapped in cotton wool for another while as she's still very vulnerable. She's such a tiny wee thing and she hasn't really had any weight gain over the past 4 months. Poor little munchkin is still only 6.7 kilos but she's very petite so doesn't look too scrawny. We recently started a new high calorie formula and we've started putting pureed food into her tummy tube so fingers crossed the next time I write a blog, I'll be reporting a weight gain.
Otherwise, we're keeping pretty well. Ger has been training every spare minute her gets as he's doing the marathon in a few weeks. I'm so proud of him -he's been so disciplined despite the crazy time we've had. Think it's been his lifesaver to be honest. I like calling him Forest Gump these days cause he just keeps on running!!!....Speaking of which, he's just set up a sponsorship in aid of Ronald McDonald House, as they were so good to us when Ashling spent the first few months in hospital.
Where to start??? It's been pretty full on time since Ashling got the Mickey Button in her tummy. For some reason the first week was great, which was when I wrote the last blog. Then things went steadily downhill for a while and I hadn't the heart to write another blog, desperately waiting for things to improve. But that's really only the case now.
Ashling has had quite a few problems with her mickey button. Her mucus (reflux) came back in force, plus she's had quite a few infections in her surgical wound (the opening of the tube) and she's had a lot of problems with extra tissue building up around the hole. This has all been quite painful for Ashling and a pain in the butt for us because we've had to clean and dress it about 3 times a day since she got it (and still have to). She's also still very screamish about being on her tummy because of this discomfort so we have had a standstill in her physical development in relation to rolling, pushing up with her arms etc.
Then we decided it was time for a holiday so we went to Australia. It was fantastic to catch up with really close friends and Ashling was really good during the holiday, very easy to take away, despite the oxygen etc. We were even able to take her off the oxygen most days for a substantial amount of time and she coped very well. However, somewhere along the way (maybe even on the plane), she picked up a nasty bug. So the morning after we arrived home, we had to take her the Dr. That was 2 weeks ago and she's been very sick since, with what turned out to be a bout of pneumonia. We had to go to hospital for 4 days as she was very weak and needed IV antibiotics and extra oxygen. But she's doing much much better over the last 48 hours. Hence, I've decided to finally update the blog!
Can't believe it's only a couple of weeks to her birthday. What a year! She's beginning to get quite curious about the world but also a bit bored just being at home with me. But we'll have to keep her wrapped in cotton wool for another while as she's still very vulnerable. She's such a tiny wee thing and she hasn't really had any weight gain over the past 4 months. Poor little munchkin is still only 6.7 kilos but she's very petite so doesn't look too scrawny. We recently started a new high calorie formula and we've started putting pureed food into her tummy tube so fingers crossed the next time I write a blog, I'll be reporting a weight gain.
Otherwise, we're keeping pretty well. Ger has been training every spare minute her gets as he's doing the marathon in a few weeks. I'm so proud of him -he's been so disciplined despite the crazy time we've had. Think it's been his lifesaver to be honest. I like calling him Forest Gump these days cause he just keeps on running!!!....Speaking of which, he's just set up a sponsorship in aid of Ronald McDonald House, as they were so good to us when Ashling spent the first few months in hospital.
Well, that's it for now. Thanks for taking the time to read this and for continuing to follow Ashling's progress. Lots of love, Car and Ger xxx
Hope you like the new photos!
Wednesday, August 13, 2008
Recovering well.....little legend!
Well our munchkin is recovering really quickly after her surgery, which went very well. She was very uncomfortable for a few days and the drugs that they gave her in the hospital didn't suit her; so the first couple of days were very hard.
However, since she's come home, she's been very content, more content than she's ever been to be honest! She's smiling and chatting more than ever. That tube must have been making her miserable. Naturally her tummy is very sore since the surgery and the hole has been leaking and ooozing quite a lot. We're keeping her on pamol and that seems to be taking the edge off her pain. If we forget to give it to her, there are a lot of tears so she must still be pretty uncomfortable. But besides having to dress the wound and stuff, which were expected problems, it's been a huge success. She hasn't been getting sick much and she's started taking small amounts of solids already. Woo hoo! Roll on some fat!
Thank you all so so much for your thoughts and prayers. Hope you like the new photos and videos.
http://www.youtube.com/watch?v=PQX-yJwex6M
http://www.youtube.com/watch?v=MLpjhFlOTWM
(Just a quick note if you have a slow connection, you need to let it load first for about 30 seconds: you'll see a pink line moving along underneath it, ahead of the video. If you’re not sure how to do this, just pause it and let it load, then work away. Otherwise, it will keep starting and stopping for you).
Lots of love, Car and Ger xxx
However, since she's come home, she's been very content, more content than she's ever been to be honest! She's smiling and chatting more than ever. That tube must have been making her miserable. Naturally her tummy is very sore since the surgery and the hole has been leaking and ooozing quite a lot. We're keeping her on pamol and that seems to be taking the edge off her pain. If we forget to give it to her, there are a lot of tears so she must still be pretty uncomfortable. But besides having to dress the wound and stuff, which were expected problems, it's been a huge success. She hasn't been getting sick much and she's started taking small amounts of solids already. Woo hoo! Roll on some fat!
Thank you all so so much for your thoughts and prayers. Hope you like the new photos and videos.
http://www.youtube.com/watch?v=PQX-yJwex6M
http://www.youtube.com/watch?v=MLpjhFlOTWM
(Just a quick note if you have a slow connection, you need to let it load first for about 30 seconds: you'll see a pink line moving along underneath it, ahead of the video. If you’re not sure how to do this, just pause it and let it load, then work away. Otherwise, it will keep starting and stopping for you).
Lots of love, Car and Ger xxx
Tuesday, August 5, 2008
Surgery postoned from Mon 4th to Wed 6th
Just by 2 days but for those of you who have contacted us to know how it all went yesterday......it didn't!
The private hospital pulled out at the last minute, a bit nervous of our little munchkin's needs. They thought she'd be better off in a childrens hospital, more able for her needs. So she's been bumped up the list and she is getting it done in Starship (the childrens hospital) under the public system on Wednesday morning...tomorrow.
Will be in touch. Thanks for all the good wishes and prayers x
The private hospital pulled out at the last minute, a bit nervous of our little munchkin's needs. They thought she'd be better off in a childrens hospital, more able for her needs. So she's been bumped up the list and she is getting it done in Starship (the childrens hospital) under the public system on Wednesday morning...tomorrow.
Will be in touch. Thanks for all the good wishes and prayers x
Wednesday, July 30, 2008
9 months and counting!
Well Ashling was 9 months a few days ago, and her latest party trick is that she's saying 'Dad Dad' though she has no idea what she is saying. Dad is delighted all the same. She is also starting to clap her hands. The Nanas are responsible for this trick!
Despite being a bit weak and low in energy in the last week, she's generally in great form since she recovered from that nasty spell a few weeks ago (about a month of sickness). Friends of ours were round recently and knocked some great giggles out of her. It is worth looking at. http://www.youtube.com/watch?v=2g-AgR2TKrY. Just a quick note for those of you with a slow connection, you need to let it load first for about 30 seconds: you'll see a pink line moving along underneath it, ahead of the video. If you’re not sure how to do this, just pause it and let it load, then work away. Otherwise, it will keep starting and stopping for you.
Anyway, just wanted to get you up to speed with Ashling's progress: We tried taking the tube out for 4 days and letting her get as hungry as possible. It was all very stressful to be honest cause there was so much pressure on. Unfortunately, as much as she showed an improvement in oral feeding than when the tube is in, she just couldn't take in enough milk to sustain the energy she needed to continue. It was a bit of a catch 22 - starve her so that she would feed, but with little food and low energy, she got tired after 5 minutes and wouldn't feed much after that. The good thing about it all is that we are now very confident that she will feed long term, when she has enough strength and stamina to do so because she showed a lot of interest and capability.
The other thing that we've discovered is that it seems to be the tube that’s been causing all the excess mucus and spillage. During the time that the tube was out, Ash didn't get sick much at all. So the next step from here is for Ashling to get a mickey button (a gastrostomy). We went to see the surgeon and there's a 6 month wait on the public list. Luckily, Ash is covered privately so we're actually getting it done next Monday (4th of August). Ash will be in hospital for a few days after it.
Hopefully, she will do much better with the mickey button as she will be able to eat as much as she likes orally, without the gagging feeling of the tube hanging down the back of her throat. We're really hoping that she won't need it for more than a year or two. If you want more information on her gastrostomy, have a look at the following link. Ash will be getting the balloon device mickey button. http://www.ich.ucl.ac.uk/factsheets/families/F000380/
Well that's about it for now. Over and out xxx
Despite being a bit weak and low in energy in the last week, she's generally in great form since she recovered from that nasty spell a few weeks ago (about a month of sickness). Friends of ours were round recently and knocked some great giggles out of her. It is worth looking at. http://www.youtube.com/watch?v=2g-AgR2TKrY. Just a quick note for those of you with a slow connection, you need to let it load first for about 30 seconds: you'll see a pink line moving along underneath it, ahead of the video. If you’re not sure how to do this, just pause it and let it load, then work away. Otherwise, it will keep starting and stopping for you.
Anyway, just wanted to get you up to speed with Ashling's progress: We tried taking the tube out for 4 days and letting her get as hungry as possible. It was all very stressful to be honest cause there was so much pressure on. Unfortunately, as much as she showed an improvement in oral feeding than when the tube is in, she just couldn't take in enough milk to sustain the energy she needed to continue. It was a bit of a catch 22 - starve her so that she would feed, but with little food and low energy, she got tired after 5 minutes and wouldn't feed much after that. The good thing about it all is that we are now very confident that she will feed long term, when she has enough strength and stamina to do so because she showed a lot of interest and capability.
The other thing that we've discovered is that it seems to be the tube that’s been causing all the excess mucus and spillage. During the time that the tube was out, Ash didn't get sick much at all. So the next step from here is for Ashling to get a mickey button (a gastrostomy). We went to see the surgeon and there's a 6 month wait on the public list. Luckily, Ash is covered privately so we're actually getting it done next Monday (4th of August). Ash will be in hospital for a few days after it.
Hopefully, she will do much better with the mickey button as she will be able to eat as much as she likes orally, without the gagging feeling of the tube hanging down the back of her throat. We're really hoping that she won't need it for more than a year or two. If you want more information on her gastrostomy, have a look at the following link. Ash will be getting the balloon device mickey button. http://www.ich.ucl.ac.uk/factsheets/families/F000380/
Well that's about it for now. Over and out xxx
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