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
Wednesday, June 25, 2008
A Thundering Rogue
Our munchkin is turning into a bit of a character. It's amazing how babies know exactly what they do and don't want. Ashling is so stubborn. She is very keen to put her thumb in her mouth in conjunction with whichever toy she's playing with. They have to go in at exactly the same time! This can be very tricky, as you can imagine. But as soon as we try to help her, she gets all grizzly and tries again herself, ending up highly frustrated if she can't achieve it.
She's also doing the whole thing of being perfectly happy in her cot until she hears me quietly sneaking into her room for something. Then suddenly it's "Waaaaaaahhhh" as if she's miserable. Kids! They start the messin very early. She's a thundering rogue already and has both of us wrapped round her little finger.
Nothing much has changed, although she's much more alert and active with her hands and legs. The Orthopedic surgeon is going to inject botox into her legs the week after next (no there's no free samples for Mammy's forehead!). What this will apparently do is that it will temporarily immobilise her quadricept muscles (front of thigh) and so she will have to use her hamstrings instead (back of thighs). The idea is that the muscles at the back of her legs will get stronger and this will hopefully allow her to extend and straighten her legs properly. Fingers crossed that it will work!
One of our main concerns at the moment is that her weight is quite poor, she is tiny -about 14 lbs. We've been trying everything to fatten her up but she's not gaining much, mainly due to the fact that she wont take much solids and she still throws her milk up from time to time. This is frustrating the life out of me to be honest cause she's doing so well in other ways, but I'd love to see her a bit more robust! We've just started giving her a supplement which will hopefully help to fatten her up so fingers crossed on that count too.
Otherwise, she's still on oxygen and she still has a feeding tube. We're hoping to try taking her feeding tube out for a while to see if she would take more without the tube down the back of her throat! (wouldn't you!). The idea is to take it out and hope that she'll get hungry enough to feed properly (over time) But she will ultimately lose weight in the process so we're waiting till she has a bit more reserve.
Well that's it for now. She's 8 months today!!! Can't believe it.
She's also doing the whole thing of being perfectly happy in her cot until she hears me quietly sneaking into her room for something. Then suddenly it's "Waaaaaaahhhh" as if she's miserable. Kids! They start the messin very early. She's a thundering rogue already and has both of us wrapped round her little finger.
Nothing much has changed, although she's much more alert and active with her hands and legs. The Orthopedic surgeon is going to inject botox into her legs the week after next (no there's no free samples for Mammy's forehead!). What this will apparently do is that it will temporarily immobilise her quadricept muscles (front of thigh) and so she will have to use her hamstrings instead (back of thighs). The idea is that the muscles at the back of her legs will get stronger and this will hopefully allow her to extend and straighten her legs properly. Fingers crossed that it will work!
One of our main concerns at the moment is that her weight is quite poor, she is tiny -about 14 lbs. We've been trying everything to fatten her up but she's not gaining much, mainly due to the fact that she wont take much solids and she still throws her milk up from time to time. This is frustrating the life out of me to be honest cause she's doing so well in other ways, but I'd love to see her a bit more robust! We've just started giving her a supplement which will hopefully help to fatten her up so fingers crossed on that count too.
Otherwise, she's still on oxygen and she still has a feeding tube. We're hoping to try taking her feeding tube out for a while to see if she would take more without the tube down the back of her throat! (wouldn't you!). The idea is to take it out and hope that she'll get hungry enough to feed properly (over time) But she will ultimately lose weight in the process so we're waiting till she has a bit more reserve.
Well that's it for now. She's 8 months today!!! Can't believe it.
Tuesday, May 27, 2008
Can you believe it? 7 months today!!!! 27/05/08
The time is flying by with our busy lives and this little munchkin taking up so much of our time and our hearts!
Not a lot has changed since the last update other than the fact that Ashling is getting stronger and she doesn't seem to be getting sick near as often anymore. Thank God for that cause our house is destroyed. I really feel for other parents with refluxy babies cause the carpet is never the same again!
Besides that, Ashling is giggling sometimes (a bit like a Beavis and Butthead type of giggle but it's a giggle all the same - see the video attached for evidence! - http://www.youtube.com/watch?v=-UhqZcSivMs). She absolutely LOVED having her Grandparents out from Ireland and has been sulking since they left to be honest. She really enjoyed all the love and extra attention that she got from them and we're not getting half as many smiles since they returned to Ireland. I'm sure she'll perk up again in a few days. We had a fantastic time with them. They spent 4 weeks with us and we did a bit of travelling with them and Ashling was very well behaved; she didn't give us any cheek along the way!
While on our holiday, we discovered that, like her Mammy, Ashling loves spa baths! There was one in the place we were staying in Taupo and she had great fun in it. See the other video attached and watch her kick those legs. Please ignore my nudity (Yeah right!) See http://www.youtube.com/watch?v=HEJ_FwZPoHU
Otherwise, same ole same ole, she's not making much progress with her feeding, and she is still on oxygen and wearing splints on her legs for about 23 hours a day. She's in great form though. See http://www.youtube.com/watch?v=XtJl9-cF20s
Over and out. Thanks for continuing this journey with us. xxxxx
Not a lot has changed since the last update other than the fact that Ashling is getting stronger and she doesn't seem to be getting sick near as often anymore. Thank God for that cause our house is destroyed. I really feel for other parents with refluxy babies cause the carpet is never the same again!
Besides that, Ashling is giggling sometimes (a bit like a Beavis and Butthead type of giggle but it's a giggle all the same - see the video attached for evidence! - http://www.youtube.com/watch?v=-UhqZcSivMs). She absolutely LOVED having her Grandparents out from Ireland and has been sulking since they left to be honest. She really enjoyed all the love and extra attention that she got from them and we're not getting half as many smiles since they returned to Ireland. I'm sure she'll perk up again in a few days. We had a fantastic time with them. They spent 4 weeks with us and we did a bit of travelling with them and Ashling was very well behaved; she didn't give us any cheek along the way!
While on our holiday, we discovered that, like her Mammy, Ashling loves spa baths! There was one in the place we were staying in Taupo and she had great fun in it. See the other video attached and watch her kick those legs. Please ignore my nudity (Yeah right!) See http://www.youtube.com/watch?v=HEJ_FwZPoHU
Otherwise, same ole same ole, she's not making much progress with her feeding, and she is still on oxygen and wearing splints on her legs for about 23 hours a day. She's in great form though. See http://www.youtube.com/watch?v=XtJl9-cF20s
Over and out. Thanks for continuing this journey with us. xxxxx
Monday, April 14, 2008
Getting Ready for to meet her Grandparents!
Well Ashling is 5 and a half months now. She's getting noisier by the day, as said before, much like her Auntie Brenda (ha ha!).
She's doing alright, we have good and bad days, like any other baby. Her lungs seem to be much stronger but she still requires the oxygen for a bit of a boost. She spent a few days in hospital the week before last to have tests done trying to figure out what's causing all this excess mucus that she's struggling with. Unfortunately, they didn't find the cause of the mucus but on a positive note, it looks like her lung has reinflated nicely and she appears to be breathing a lot more comfortably now. Hopefully when she stops struggling with this mucus, she should be able to come off the oxygen. It could just be the tube down her throat that causing her mucus - anyone's guess at this stage!
She's getting clever now - starting to kick u a bit when she feels like it. Not often but boy, they learn pretty fast how soft the parents are. We are trying to harden up, but its bloomin hard!
Our biggest issue continues to be feeding. She has gotten used to wearing the splints all the time and she's starting to get quite good at all her stretches and exercises. However, when it comes to feeding, a lot of distraction is needed!!! She still only tolerates a small amount in her mouth before gagging. We are totally reliant on her nasal gastic tube to give her 99% of her feed. We dont think this is necessarily related to Escobars Syndrome, it is most likely because of the fact that she couldn't feed for so long in the hospital because of the incumbersome oxygen device she was on, so she never learned how to feed properly. In addition, most of the time that she was in hospital, she was being suctioned daily down her nose and in her mouth to get rid of excess secretions. As a result, she's very screamish about her face and has negative associations with both her nose and her mouth. Its so difficult to break this, though we're trying very very hard and getting fantastic help from medical staff (who have been amazing).
She's doing alright, we have good and bad days, like any other baby. Her lungs seem to be much stronger but she still requires the oxygen for a bit of a boost. She spent a few days in hospital the week before last to have tests done trying to figure out what's causing all this excess mucus that she's struggling with. Unfortunately, they didn't find the cause of the mucus but on a positive note, it looks like her lung has reinflated nicely and she appears to be breathing a lot more comfortably now. Hopefully when she stops struggling with this mucus, she should be able to come off the oxygen. It could just be the tube down her throat that causing her mucus - anyone's guess at this stage!
She's getting clever now - starting to kick u a bit when she feels like it. Not often but boy, they learn pretty fast how soft the parents are. We are trying to harden up, but its bloomin hard!
Our biggest issue continues to be feeding. She has gotten used to wearing the splints all the time and she's starting to get quite good at all her stretches and exercises. However, when it comes to feeding, a lot of distraction is needed!!! She still only tolerates a small amount in her mouth before gagging. We are totally reliant on her nasal gastic tube to give her 99% of her feed. We dont think this is necessarily related to Escobars Syndrome, it is most likely because of the fact that she couldn't feed for so long in the hospital because of the incumbersome oxygen device she was on, so she never learned how to feed properly. In addition, most of the time that she was in hospital, she was being suctioned daily down her nose and in her mouth to get rid of excess secretions. As a result, she's very screamish about her face and has negative associations with both her nose and her mouth. Its so difficult to break this, though we're trying very very hard and getting fantastic help from medical staff (who have been amazing).
So if you get a chance to say a wee prayer for our litle munchkin, please direct it to her feeding! We would really appreciate it.
Ger's parents are arriving in a few days from Ireland to meet their first grand-child (though there's another gorgeous one since). They will be staying with us for a month and Ashling will be going on her first holiday (to Taupo and Roturua) while they are around. Woo Hoo.
Lots of love xxxx
Wednesday, March 5, 2008
4 months old now and starting to make sounds...
Well our munchkin has hit the 4 month mark. Can't believe it. In some ways it feels like she should be 16 years old because of all that's happened but in other ways, can't believe she's 4 months old already! She'll be moving out of home soon!
Ashling is feeling a bit better these days. She's had a very tough few weeks with reflux, oral thrush and then a throat infection - all connected in different ways. We think we are finally turning a corner as she hasn't been as sick the last few days. I have fully weaned her off breast milk in the last few days and she is taking formula now, one for babies with allergies and that seems to be staying in her tummy better than the cow's milk one. She is also on reflux medication and this is helping too I think (But it also seems to be constipating her!).
Things are starting to calm down a wee bit, many of her appointments are becoming fortnightly instead of weekly, which is a really good thing cause her secretary has been starting to get really tired and grumpy! Hopefully, over the next few weeks I'll be able to start getting back in touch with some of you and get some sort of a routine happening. I'm craving one.
Ger is doing really well. His way of getting through the tough times over the past few months was to exercise and he did a standard triathlon. He's as fit as a fiddle. Don't know how he does it all. Anyway, I'm looking forward to getting stuck into a bit of decent exercise myself over the next few months.
Back to the most spoilt girl in the Southern Hemisphere - Ashling's doing a bit of cooing and some more smiling these days and melting our hearts with it. She was so noisy trying to chat to Ger the other night, that I had to kick the 2 of them of the room cause I was trying to watch Grey's Anatomy (about the only programme I watch during the week).
It's really fun listening to her though. It's like she found her voice overnight and now she won't shut up. Really reminds me of someone......no, not me! Her auntie Brenda of course.
Gosh, babies are pretty cool I have to say. Despite all that's happened, we have no regrets whatsoever, that's for sure.
We will upload some more photos tomorrow. xxx
Take Care xxxx
Ashling is feeling a bit better these days. She's had a very tough few weeks with reflux, oral thrush and then a throat infection - all connected in different ways. We think we are finally turning a corner as she hasn't been as sick the last few days. I have fully weaned her off breast milk in the last few days and she is taking formula now, one for babies with allergies and that seems to be staying in her tummy better than the cow's milk one. She is also on reflux medication and this is helping too I think (But it also seems to be constipating her!).
Things are starting to calm down a wee bit, many of her appointments are becoming fortnightly instead of weekly, which is a really good thing cause her secretary has been starting to get really tired and grumpy! Hopefully, over the next few weeks I'll be able to start getting back in touch with some of you and get some sort of a routine happening. I'm craving one.
Ger is doing really well. His way of getting through the tough times over the past few months was to exercise and he did a standard triathlon. He's as fit as a fiddle. Don't know how he does it all. Anyway, I'm looking forward to getting stuck into a bit of decent exercise myself over the next few months.
Back to the most spoilt girl in the Southern Hemisphere - Ashling's doing a bit of cooing and some more smiling these days and melting our hearts with it. She was so noisy trying to chat to Ger the other night, that I had to kick the 2 of them of the room cause I was trying to watch Grey's Anatomy (about the only programme I watch during the week).
It's really fun listening to her though. It's like she found her voice overnight and now she won't shut up. Really reminds me of someone......no, not me! Her auntie Brenda of course.
Gosh, babies are pretty cool I have to say. Despite all that's happened, we have no regrets whatsoever, that's for sure.
We will upload some more photos tomorrow. xxx
Take Care xxxx
Monday, March 3, 2008
A Diagnosis for Ashling....finally!
Just wanted to let you all know that Ger and I got news during the week about Ashling. They have finally been able to diagnose Ashling’s syndrome. It will take a few minutes to read this, so make a cup of tea and relax or read it later when you have time.
Ashling has something called Escobar syndrome (also known as Multiple Pterygium Syndrome), which is a very rare disorder. In fact, there are only between 50 and 100 cases in literature, as it was only discovered a few years ago. The genetics team had mentioned this syndrome to us before but they weren’t sure as they have never actually seen a case of it, just read case studies. They sent Ashling’s DNA to Germany for testing and we have been waiting for a result for the past few months.
The main cause of Escobars Syndrome is an auto-recessive gene, which comes from both parents, so both of us are carriers. Apparently we are all carriers of about 7 potential recessive genes like this, but it is extremely rare that 2 people meet and have the same recessive gene. The chances of this happening are about 1:40,000!!!(Unless you’re related…which we’ve been asked many times!!!). But this means that one of both of our sets of parents is also a carrier and there’s a 25% chance that all of our siblings carry it (that’s you guys). But obviously the chance of you meeting or having met someone else who has it is the same, 1:40,000!
The general prognosis for Escobars is quite good. The way it affects the baby happens in the womb because the baby doesn’t develop a receptor which tells the limbs to move. That’s why both Ashling and Ciara were so quiet in the womb. Then in week 32 of the pregnancy, babies develop adult receptors and these take over. That’s why I felt more movement towards the end of the pregnancy and consequently felt that the Dr’s worries about Ash, were wrong.
The syndrome affects the baby in a physical manner but doesn’t affect the intellect. The features of Escobars are wide-ranging and its severity can range from mild to severe. Thankfully, the genetics team believes that Ashling falls on the mild end of the spectrum, and should have a relatively normal life, though “she’ll never be an Olympian”, according to the Doctors. But only time will tell as Granddad O’ Shea is still looking for a champion javelin thrower!
What it means for us is that we have a name for her syndrome, which means something I suppose. It also gives us a little bit of a guideline regarding any potential problems that she could develop and that we have to watch out for. It also means that we will have some options if we try to have another child, as we could be screened to avoid this happening again. There is a 25% chance of this happening again so we will have to get some fertility counseling, when the time is right.
Anyway, back to our gorgeous little girl…we are quite pleased to have a diagnosis but are a bit shocked all the same. Even though life is full of the unexpected – we never expect these things to happen to us, eh!
I’m sorry that we’ve put this on the blog and not getting to tell you personally. When we see or speak with you, we’ll explain it all better and answer any questions you might have. If you want to know more about Escobars, there’s some information on the internet. However, I can safely tell you from experience that most of it doesn’t really relate to Ashling as it describes more severe cases. We wrote away to the National Organization of Rare Diseases and paid to get a formal description of it. I am adding that description for you below as it will be a more objective reference for you to read (that is for those of you who might want to read more about it). If we get more information from the genetics team, we will post it on here too.
Thanks for taking the interest in reading this.
Love to you all,
Caroline, Ger and Ashling xxxxx
Synonyms of Multiple Pterygium Syndrome:
Escobar Syndrome
multiple pterygium syndrome
pterygium colli syndrome
pterygium universale
General Discussion: Multiple pterygium syndrome is a very rare genetic disorder characterized by minor facial anomalies, short stature, vertebral defects, multiple joints in a fixed position (contractures) and webbing (pterygia) of the neck, inside bend of the elbows, back of the knees, armpits and fingers. Multiple pterygium syndrome usually follows autosomal recessive inheritance but can also follow autosomal dominant inheritance.
Symptoms: Multiple pterygium syndrome is a very rare disorder characterized by permanently bent fingers (camptodactyly), short stature, rocker-bottom or club feet, joints that are bent in a fixed position (contractures), union or webbing of the skin between the fingers (syndactyly), and/or webbing of the neck, inside bend of the elbows, back of the knees and armpits. The webbing of skin and contractures of the joints that are found in this disorder may restrict movement.Characteristic facial features can include a small jaw (micrognathia), a long vertical groove in the middle of the upper lip (philtrum), down-slanting eyes, a vertical fold of skin over the inner corner of the eye (epicanthal folds), drooping eyelids, low-set ears, cleft palate and down-turned corners of the mouth. Backward and lateral curvature of the spine (kyphoscoliosis) and spinal fusion abnormalities occur often in multiple pterygium syndrome. Other skeletal anomalies include rib fusions, hip dislocation, abnormal ear bones and absent or malformed kneecaps.Males may have undescended testes and an abnormally small penis. Females may have underdeveloped or missing labia majora..
Causes: Multiple pterygium syndrome usually follows autosomal recessive inheritance but can also follow autosomal dominant inheritance.Genetic diseases are determined by the combination of genes for a particular trait that are on the chromosomes received from the father and the mother. Recessive genetic disorders occur when an individual inherits the same abnormal gene for the same trait from each parent. If an individual receives one normal gene and one gene for the disease, the person will be a carrier for the disease, but usually will not show symptoms. The risk for two carrier parents to both pass the defective gene and, therefore, have an affected child is 25% with each pregnancy. The risk to have a child who is a carrier like the parents is 50% with each pregnancy. The chance for a child to receive normal genes from both parents and be genetically normal for that particular trait is 25%. The risk is the same for males and females. All individuals carry 4-5 abnormal genes. Parents who are close relatives (consanguineous) have a higher chance than unrelated parents to both carry the same abnormal gene, which increases the risk to have children with a recessive genetic disorder. Dominant genetic disorders occur when only a single copy of an abnormal gene is necessary for the appearance of the disease. The abnormal gene can be inherited from either parent, or can be the result of a new mutation (gene change) in the affected individual. The risk of passing the abnormal gene from affected parent to offspring is 50% for each pregnancy regardless of the sex of the resulting child..Affected
Populations: Multiple pterygium syndrome is a very rare genetic disorder that affects males and females equally. There have been approximately fifty cases of this disorder reported in the medical literature. Multiple pterygium syndrome has been found in Germany, France and England.
Standard Therapies: Therapy is supportive and depends on the severity of the webbing and spinal abnormalities. Orthopedic specialists should be consulted once a diagnosis is made because scoliosis develops before age five in most patients. Affected individuals have an increased risk for developing pneumonia due to a small rib cage so respiratory infections should be treated promptly. Patients with multiple pterygium syndrome may benefit from plastic surgery in the areas of webbing. This must be done with extreme caution as there may be major nerves and blood vessels in the area that are too short to allow for full extension of the limbs. Plastic surgery may also be performed to improve fused fingers and correct the cleft palate when present. Physical therapy can be of benefit to help in preventing the joints from becoming fixed.Drooping eyelids can interfere with vision so an ophthalmology specialist should be consulted. Hearing testing should be done because of an increased risk for conductive hearing loss. Genetic counseling may be of benefit for patients and their families.
Report last updated: 2004-06-15
Ashling has something called Escobar syndrome (also known as Multiple Pterygium Syndrome), which is a very rare disorder. In fact, there are only between 50 and 100 cases in literature, as it was only discovered a few years ago. The genetics team had mentioned this syndrome to us before but they weren’t sure as they have never actually seen a case of it, just read case studies. They sent Ashling’s DNA to Germany for testing and we have been waiting for a result for the past few months.
The main cause of Escobars Syndrome is an auto-recessive gene, which comes from both parents, so both of us are carriers. Apparently we are all carriers of about 7 potential recessive genes like this, but it is extremely rare that 2 people meet and have the same recessive gene. The chances of this happening are about 1:40,000!!!(Unless you’re related…which we’ve been asked many times!!!). But this means that one of both of our sets of parents is also a carrier and there’s a 25% chance that all of our siblings carry it (that’s you guys). But obviously the chance of you meeting or having met someone else who has it is the same, 1:40,000!
The general prognosis for Escobars is quite good. The way it affects the baby happens in the womb because the baby doesn’t develop a receptor which tells the limbs to move. That’s why both Ashling and Ciara were so quiet in the womb. Then in week 32 of the pregnancy, babies develop adult receptors and these take over. That’s why I felt more movement towards the end of the pregnancy and consequently felt that the Dr’s worries about Ash, were wrong.
The syndrome affects the baby in a physical manner but doesn’t affect the intellect. The features of Escobars are wide-ranging and its severity can range from mild to severe. Thankfully, the genetics team believes that Ashling falls on the mild end of the spectrum, and should have a relatively normal life, though “she’ll never be an Olympian”, according to the Doctors. But only time will tell as Granddad O’ Shea is still looking for a champion javelin thrower!
What it means for us is that we have a name for her syndrome, which means something I suppose. It also gives us a little bit of a guideline regarding any potential problems that she could develop and that we have to watch out for. It also means that we will have some options if we try to have another child, as we could be screened to avoid this happening again. There is a 25% chance of this happening again so we will have to get some fertility counseling, when the time is right.
Anyway, back to our gorgeous little girl…we are quite pleased to have a diagnosis but are a bit shocked all the same. Even though life is full of the unexpected – we never expect these things to happen to us, eh!
I’m sorry that we’ve put this on the blog and not getting to tell you personally. When we see or speak with you, we’ll explain it all better and answer any questions you might have. If you want to know more about Escobars, there’s some information on the internet. However, I can safely tell you from experience that most of it doesn’t really relate to Ashling as it describes more severe cases. We wrote away to the National Organization of Rare Diseases and paid to get a formal description of it. I am adding that description for you below as it will be a more objective reference for you to read (that is for those of you who might want to read more about it). If we get more information from the genetics team, we will post it on here too.
Thanks for taking the interest in reading this.
Love to you all,
Caroline, Ger and Ashling xxxxx
Synonyms of Multiple Pterygium Syndrome:
Escobar Syndrome
multiple pterygium syndrome
pterygium colli syndrome
pterygium universale
General Discussion: Multiple pterygium syndrome is a very rare genetic disorder characterized by minor facial anomalies, short stature, vertebral defects, multiple joints in a fixed position (contractures) and webbing (pterygia) of the neck, inside bend of the elbows, back of the knees, armpits and fingers. Multiple pterygium syndrome usually follows autosomal recessive inheritance but can also follow autosomal dominant inheritance.
Symptoms: Multiple pterygium syndrome is a very rare disorder characterized by permanently bent fingers (camptodactyly), short stature, rocker-bottom or club feet, joints that are bent in a fixed position (contractures), union or webbing of the skin between the fingers (syndactyly), and/or webbing of the neck, inside bend of the elbows, back of the knees and armpits. The webbing of skin and contractures of the joints that are found in this disorder may restrict movement.Characteristic facial features can include a small jaw (micrognathia), a long vertical groove in the middle of the upper lip (philtrum), down-slanting eyes, a vertical fold of skin over the inner corner of the eye (epicanthal folds), drooping eyelids, low-set ears, cleft palate and down-turned corners of the mouth. Backward and lateral curvature of the spine (kyphoscoliosis) and spinal fusion abnormalities occur often in multiple pterygium syndrome. Other skeletal anomalies include rib fusions, hip dislocation, abnormal ear bones and absent or malformed kneecaps.Males may have undescended testes and an abnormally small penis. Females may have underdeveloped or missing labia majora..
Causes: Multiple pterygium syndrome usually follows autosomal recessive inheritance but can also follow autosomal dominant inheritance.Genetic diseases are determined by the combination of genes for a particular trait that are on the chromosomes received from the father and the mother. Recessive genetic disorders occur when an individual inherits the same abnormal gene for the same trait from each parent. If an individual receives one normal gene and one gene for the disease, the person will be a carrier for the disease, but usually will not show symptoms. The risk for two carrier parents to both pass the defective gene and, therefore, have an affected child is 25% with each pregnancy. The risk to have a child who is a carrier like the parents is 50% with each pregnancy. The chance for a child to receive normal genes from both parents and be genetically normal for that particular trait is 25%. The risk is the same for males and females. All individuals carry 4-5 abnormal genes. Parents who are close relatives (consanguineous) have a higher chance than unrelated parents to both carry the same abnormal gene, which increases the risk to have children with a recessive genetic disorder. Dominant genetic disorders occur when only a single copy of an abnormal gene is necessary for the appearance of the disease. The abnormal gene can be inherited from either parent, or can be the result of a new mutation (gene change) in the affected individual. The risk of passing the abnormal gene from affected parent to offspring is 50% for each pregnancy regardless of the sex of the resulting child..Affected
Populations: Multiple pterygium syndrome is a very rare genetic disorder that affects males and females equally. There have been approximately fifty cases of this disorder reported in the medical literature. Multiple pterygium syndrome has been found in Germany, France and England.
Standard Therapies: Therapy is supportive and depends on the severity of the webbing and spinal abnormalities. Orthopedic specialists should be consulted once a diagnosis is made because scoliosis develops before age five in most patients. Affected individuals have an increased risk for developing pneumonia due to a small rib cage so respiratory infections should be treated promptly. Patients with multiple pterygium syndrome may benefit from plastic surgery in the areas of webbing. This must be done with extreme caution as there may be major nerves and blood vessels in the area that are too short to allow for full extension of the limbs. Plastic surgery may also be performed to improve fused fingers and correct the cleft palate when present. Physical therapy can be of benefit to help in preventing the joints from becoming fixed.Drooping eyelids can interfere with vision so an ophthalmology specialist should be consulted. Hearing testing should be done because of an increased risk for conductive hearing loss. Genetic counseling may be of benefit for patients and their families.
Report last updated: 2004-06-15
Wednesday, February 13, 2008
Three and a half months and getting bigger....
Well Ashling is finally smiling and getting used to being at home. It took longer than we'd expected for her to figure it all out! But she's a lot more relaxed now.
A quick update on her wellbeing since we got home: Unfortunately when we went in for an appointment with the Orthopedic team, they decided that Ashling would benefit from a few more weeks of casts as one knee wasn't as straight as the other so she's back in the full leg casts - poor little thing cause it's very hot here in Auckland at the moment. Only a couple more weeks hopefully. The team in there are fantastic though and couldn't be giving her better care.
The biggest challenge since we've come home has been her feeding. She has developed very bad reflux, which apparently is quite common for babies who are predominantly fed by tube. This means that her feeds are taking ages and she's pretty uncomfortable during them so we have to take frequent breaks. We're hoping things will improve though as her Dr has prescribed something which should help.
In relation to her oxygen, she seems to be more comfortable and doesn't seem to be working as hard with her breathing so the home care nurses have started trying to gradually wean her down or off the oxygen. So fingers crossed over the next few weeks.
Otherwise, she's gaining weight and looking good - we just need to get rid of the bloomin' tubes!
Sorry that I haven't been in touch, it's been really busy. Ashling has been getting excellent home care with almost daily visits and she's getting her casts changed weekly as well so I haven't had time to do anything, besides take care of her. I've decided to stop expressing milk though and start giving her formula (very tough decision!) so hopefully that will give me some bit of time. Feeding has been taking well over an hour, then I express and then have about a half hour before it starts all over again. Pure madness! Things should start to ease up now hopefully. Bring it on!!!
Thanks again for reading this. Will put some more photos up in the next week or two. xxxxx
A quick update on her wellbeing since we got home: Unfortunately when we went in for an appointment with the Orthopedic team, they decided that Ashling would benefit from a few more weeks of casts as one knee wasn't as straight as the other so she's back in the full leg casts - poor little thing cause it's very hot here in Auckland at the moment. Only a couple more weeks hopefully. The team in there are fantastic though and couldn't be giving her better care.
The biggest challenge since we've come home has been her feeding. She has developed very bad reflux, which apparently is quite common for babies who are predominantly fed by tube. This means that her feeds are taking ages and she's pretty uncomfortable during them so we have to take frequent breaks. We're hoping things will improve though as her Dr has prescribed something which should help.
In relation to her oxygen, she seems to be more comfortable and doesn't seem to be working as hard with her breathing so the home care nurses have started trying to gradually wean her down or off the oxygen. So fingers crossed over the next few weeks.
Otherwise, she's gaining weight and looking good - we just need to get rid of the bloomin' tubes!
Sorry that I haven't been in touch, it's been really busy. Ashling has been getting excellent home care with almost daily visits and she's getting her casts changed weekly as well so I haven't had time to do anything, besides take care of her. I've decided to stop expressing milk though and start giving her formula (very tough decision!) so hopefully that will give me some bit of time. Feeding has been taking well over an hour, then I express and then have about a half hour before it starts all over again. Pure madness! Things should start to ease up now hopefully. Bring it on!!!
Thanks again for reading this. Will put some more photos up in the next week or two. xxxxx
Tuesday, January 22, 2008
At Home......Yipee!!!! Jan 23rd, 2008
Thank you once again for your warm, encouraging comments! Well we've nearly a week down at home now and it's been great! Ashling has found it all quite strange and we still haven't managed to get smiles from her, which we naively thought would happen the minute we got her out of the hospital. She still isn't really sure what's going on but she's pretty interested in all the new things she's experiencing. Ger and I are really enjoying being at home though it's been really full on! Not living in the house for a few months has left us with LOTS of things to do but we are delighted to be able to finally do them!
I thought that we'd be settled in a few days and that I'd been well and truly on the road to contacting friends who are long overdue calling or writing to, but it hasn't really happened like that. It’s going to take us a while to settle in so please forgive us if it takes us a while to get in contact properly.
Ashling is doing well. We have 2 tanks of oxygen, a big one and a smaller portable one. The big one has a long tube so we can pretty much walk around the whole house with her, taking care that we don't trip over the blooming thing! The portable one is great for when we go out for a walk or something. New tanks are delivered weekly. The plan is to leave her on the same amount of oxygen for a couple of weeks and then to try weaning it down slowly, with the hope that we can get her off it in a few months. In relation to her feeding, she's still finding it really hard. She has forgotten how to suck/swallow/breathe at the same time (since her surgery) so we have to be very patient with her. Unfortunately, she has no interest in my boobs (something Ger can't get his head around!) but I have been expressing since she was born so she's had breast milk to date. She's now starting to take some milk from a specialized bottle. She sucks for about 20 mins each feed (manages to fool us every time - we think she's sucked half the bottle!), but she usually only manages to get about 10-20 mls (of a 120mls feed). So we end up putting the rest of the feed down her nasal gastric tube (tube down her nose to her tummy). Again, this is another contraption that we're hoping will go with time cause she doesn't like it and tries to pull it out. She succeeded the other night and poor Ger had to put another one down, but did a mighty job I have to say despite the fact that she went absolutely mental! She's getting very strong now and when she doesn’t want something, she's not shy about letting us know! It's great though cause it's a good sign of her progress. Otherwise, she's continuing to wear splints on her hands and feet when she sleeps and she doesn't make any fuss about that, thank God.
That's about it for now. Thanks so much for your interest and ongoing comments on this site. Even though Ashling is home now, we will still keep this blog going occasionally, letting you know of any major updates, and we'll continue to put new photos of Ashling on it. We've really enjoyed doing this blog and it has saved us from repeating the same news about Ash over and over again. At least now it's good news so I don't mind repeating that half as much! It's been wonderful hearing from people whom we haven't talked to for ages, thanks again and keep it up. We are at home now and our landline is 09 4268812.
Take Care, Lots of love always, Car, Ger and Ashling xxx
I thought that we'd be settled in a few days and that I'd been well and truly on the road to contacting friends who are long overdue calling or writing to, but it hasn't really happened like that. It’s going to take us a while to settle in so please forgive us if it takes us a while to get in contact properly.
Ashling is doing well. We have 2 tanks of oxygen, a big one and a smaller portable one. The big one has a long tube so we can pretty much walk around the whole house with her, taking care that we don't trip over the blooming thing! The portable one is great for when we go out for a walk or something. New tanks are delivered weekly. The plan is to leave her on the same amount of oxygen for a couple of weeks and then to try weaning it down slowly, with the hope that we can get her off it in a few months. In relation to her feeding, she's still finding it really hard. She has forgotten how to suck/swallow/breathe at the same time (since her surgery) so we have to be very patient with her. Unfortunately, she has no interest in my boobs (something Ger can't get his head around!) but I have been expressing since she was born so she's had breast milk to date. She's now starting to take some milk from a specialized bottle. She sucks for about 20 mins each feed (manages to fool us every time - we think she's sucked half the bottle!), but she usually only manages to get about 10-20 mls (of a 120mls feed). So we end up putting the rest of the feed down her nasal gastric tube (tube down her nose to her tummy). Again, this is another contraption that we're hoping will go with time cause she doesn't like it and tries to pull it out. She succeeded the other night and poor Ger had to put another one down, but did a mighty job I have to say despite the fact that she went absolutely mental! She's getting very strong now and when she doesn’t want something, she's not shy about letting us know! It's great though cause it's a good sign of her progress. Otherwise, she's continuing to wear splints on her hands and feet when she sleeps and she doesn't make any fuss about that, thank God.
That's about it for now. Thanks so much for your interest and ongoing comments on this site. Even though Ashling is home now, we will still keep this blog going occasionally, letting you know of any major updates, and we'll continue to put new photos of Ashling on it. We've really enjoyed doing this blog and it has saved us from repeating the same news about Ash over and over again. At least now it's good news so I don't mind repeating that half as much! It's been wonderful hearing from people whom we haven't talked to for ages, thanks again and keep it up. We are at home now and our landline is 09 4268812.
Take Care, Lots of love always, Car, Ger and Ashling xxx
Thursday, January 17, 2008
We're home, We're home, We're home
Hi Everyone,
We are delighted to report that we arrived home this afternoon.Ashling was examined this morning and the Doctor gave us the green light to go home. She didn't have to say it twice; we had the car already packed!!!We spent last night in a parent room which was a room with just the three of us, a warm-up to being at home and it all went well so now we are at home and confident that we can manage on our own....time will tell!!We have been waiting for this day for so long it was very exciting coming home in the car, well for us anyway, Ashling slept all the way! She is finding her new surroundings strange but will hopefully settle in a few days.
We had a discharge meeting with some of the doctors involved in her case and they explained that although she was going home, she is still a very vulnerable little girl. Because she is reliant on oxygen due to her compromised lungs, even something as small as a cough or a cold could be a serious issue for her particularly over the next few months. They have asked us to be responsible parents and not to take her to any busy public places as she is susceptible to bugs that anyone carries. So we won't be taking her to shopping centres etc. The same goes for all visitors and while we welcome a visit from our friends and family once we settle back, we would ask that you please think twice about calling if you are in any way sick or living with anyone who is sick. Just postpone and come another time.This may sounds like we are going to wrap her in cotton wool, but 3 months is enough hospital for our little munchkin.
Anyway, we are delighted to be at home, another big step.
Thank you to everyone for your prayers and support they have really helped in getting us this far. We cannot thank people enough at the hospital, everyone has been so good to us and some have gone far beyond the call of duty, Caroline and I are deeply grateful for your professionalism and friendship in helping us to get our little ball of joy home. Also everyone at Ronald McDonald has been wonderful and staying there has made our life so much easier over the past 12 weeks.Finally to our family and friends, who have babysat, cooked us dinners, taken us out and come to visit us, thank you all, you have been wonderful and we expect you to continue to be wonderful!!! Only messing!
That’s it for now from a very happy Mammy and Daddy
We are delighted to report that we arrived home this afternoon.Ashling was examined this morning and the Doctor gave us the green light to go home. She didn't have to say it twice; we had the car already packed!!!We spent last night in a parent room which was a room with just the three of us, a warm-up to being at home and it all went well so now we are at home and confident that we can manage on our own....time will tell!!We have been waiting for this day for so long it was very exciting coming home in the car, well for us anyway, Ashling slept all the way! She is finding her new surroundings strange but will hopefully settle in a few days.
We had a discharge meeting with some of the doctors involved in her case and they explained that although she was going home, she is still a very vulnerable little girl. Because she is reliant on oxygen due to her compromised lungs, even something as small as a cough or a cold could be a serious issue for her particularly over the next few months. They have asked us to be responsible parents and not to take her to any busy public places as she is susceptible to bugs that anyone carries. So we won't be taking her to shopping centres etc. The same goes for all visitors and while we welcome a visit from our friends and family once we settle back, we would ask that you please think twice about calling if you are in any way sick or living with anyone who is sick. Just postpone and come another time.This may sounds like we are going to wrap her in cotton wool, but 3 months is enough hospital for our little munchkin.
Anyway, we are delighted to be at home, another big step.
Thank you to everyone for your prayers and support they have really helped in getting us this far. We cannot thank people enough at the hospital, everyone has been so good to us and some have gone far beyond the call of duty, Caroline and I are deeply grateful for your professionalism and friendship in helping us to get our little ball of joy home. Also everyone at Ronald McDonald has been wonderful and staying there has made our life so much easier over the past 12 weeks.Finally to our family and friends, who have babysat, cooked us dinners, taken us out and come to visit us, thank you all, you have been wonderful and we expect you to continue to be wonderful!!! Only messing!
That’s it for now from a very happy Mammy and Daddy
Thursday, January 10, 2008
Light at the end of the tunnel!!!!
Well the word on the street is that - if Ashling keeps doing what's she's doing....she'll be going home in the next couple of weeks!
She's been getting stronger and stronger and her oxygen requirements are minimal now. So hopefully, all things considered, once her latest casts are off, her oxgyen remains stable and her vaccinations are done, we'll be ready for home. Unfortunately, she'll go home on some oxygen and with a feeding tube, but both of these should only be required in the short term only. Certainly - looking at the improvement she has made over the last 2 weeks, we wouldn't expect her to need them for very long.
We are thrilled!!!
She's been getting stronger and stronger and her oxygen requirements are minimal now. So hopefully, all things considered, once her latest casts are off, her oxgyen remains stable and her vaccinations are done, we'll be ready for home. Unfortunately, she'll go home on some oxygen and with a feeding tube, but both of these should only be required in the short term only. Certainly - looking at the improvement she has made over the last 2 weeks, we wouldn't expect her to need them for very long.
We are thrilled!!!
Tuesday, January 1, 2008
Happy New Year Everyone!
Sorry for being so slack over Christmas. We had intended on doing a little Christmas video etc but it just never happened. We did take photos though and we will upload them in the next few days.
Just a quick update on Ashling. She has made great progress over the Christmas period. The doctors have been able to reduce her oxygen, and finally, there seems to be an end in sight!
More on her progress over the next week. It's a gorgeous day and I want to get out for a walk while she's asleep!
Hope you all had an enjoyable New Year's Eve.
Just a quick update on Ashling. She has made great progress over the Christmas period. The doctors have been able to reduce her oxygen, and finally, there seems to be an end in sight!
More on her progress over the next week. It's a gorgeous day and I want to get out for a walk while she's asleep!
Hope you all had an enjoyable New Year's Eve.
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