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
Hello again
Wednesday, March 5, 2008
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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