Friday, June 25, 2004
Home Again
Hi everyone
Just a quick note to let you know that Michelle and Eliza came home on Tuesday. The bi-pap ventilation seems to be helping her and she has slept through most nights, although we are having a lot of trouble keeping the mask on her face as her head is still so narrow it just slides off. As you can imagine its an enormous fight each night to get it on anyway and I’m sure she goes to sleep each night hating both of us intensely :-)
Unfortunately the bad news is that she has to go back into hospital around the 12th July to have a gastrostomy tube (G-Tube) placed in her stomach. This will replace the nasal gastric tube she currently uses to feed. There are several advantages of this type of feeding tube in that it won’t get in the way of her bi-pap mask, it may help her to swallow better and it might even cut down the amount of secretions she generates. Not to mention that we can pick her up and cuddle her without the damn thing getting in the way. Like most operations it does have its dangers and for Eliza they are considerable so please keep her in your thoughts during this time. There are also some post operative things that can happen with the g-tube, the worst of which would mean having yet another operation called a fundoplication (tightening of the muscle at the top of the stomach) which is far more involved and would require around 4 hours under anaesthetic (compared with 20-30 mins for the G-tube). We did get some good news, the scan she had on her kidneys recently showed no scaring from the renal reflux so it looks as though it is something that will correct itself over time (we hope)!
We would also like to thank everyone that bought Eliza a christening present . We have been meaning to send out a thankyou note to each of you, but time has gotten away a little bit with all of the doctors visits and it has proven a difficult task. So please know that they are appreciated.
I’ve also attached a few photo’s just in case you have forgotten how cute she is :-)
Regards
Darren
Just a quick note to let you know that Michelle and Eliza came home on Tuesday. The bi-pap ventilation seems to be helping her and she has slept through most nights, although we are having a lot of trouble keeping the mask on her face as her head is still so narrow it just slides off. As you can imagine its an enormous fight each night to get it on anyway and I’m sure she goes to sleep each night hating both of us intensely :-)
Unfortunately the bad news is that she has to go back into hospital around the 12th July to have a gastrostomy tube (G-Tube) placed in her stomach. This will replace the nasal gastric tube she currently uses to feed. There are several advantages of this type of feeding tube in that it won’t get in the way of her bi-pap mask, it may help her to swallow better and it might even cut down the amount of secretions she generates. Not to mention that we can pick her up and cuddle her without the damn thing getting in the way. Like most operations it does have its dangers and for Eliza they are considerable so please keep her in your thoughts during this time. There are also some post operative things that can happen with the g-tube, the worst of which would mean having yet another operation called a fundoplication (tightening of the muscle at the top of the stomach) which is far more involved and would require around 4 hours under anaesthetic (compared with 20-30 mins for the G-tube). We did get some good news, the scan she had on her kidneys recently showed no scaring from the renal reflux so it looks as though it is something that will correct itself over time (we hope)!
We would also like to thank everyone that bought Eliza a christening present . We have been meaning to send out a thankyou note to each of you, but time has gotten away a little bit with all of the doctors visits and it has proven a difficult task. So please know that they are appreciated.
I’ve also attached a few photo’s just in case you have forgotten how cute she is :-)
Regards
Darren
Tuesday, June 15, 2004
Eliza Update: Alone again sort of
Hi everyone
The two girls in my life have deserted me again. Eliza is back at Westmead hospital to have a Bi-Pap machine calibrated to her needs and Michelle is staying out there with her. For those of you wondering what the hell Bi-Pap is (and I would have been one of you prior to Eliza’ arrival), it is a machine that provides both I-Pap and E-Pap (clear as mud ). Seriously, The I is for inhale and E for exhale and the Pap is Positive Airway Pressure, so in effect it provides help with both the breathing in and out, although the machine doesn’t breathe for her, it help her to complete each breath and to ensure that she doesn’t apnoea. She only needs this while she is asleep and it will hopefully help her to avoid some of the side effects from the apnoea’s that are currently interrupting her sleep such as CO2 build-up and lack of REM sleep. They also hope it will help her to start breathing a bit deeper and slower than she currently does even when awake.
Her first attempt with the bi-pap has been a bit rough and Eliza was very upset when I left the hospital, but Michelle called me later in the evening to tell me that she had finally fallen asleep about 30 mins after I left and that she was breathing in Sync with the machine, so that in itself is a good sign.
It was kind of funny tonight, Michelle and I had discussed how every time Eliza tries to sleep in a hospital a Doctor comes in and wants to examine her, then once you get rid of that lot, the next lot come in when she is due to be fed, delaying her feed. By the end of it we are left with a screaming, tired and hungry mess to deal with. Well it happened again tonight, although at feed time it was only a couple of student doctors and they turned and ran after being told about her propensity to chuck up if disturbed during feeds. Student Doctors Nil, Eliza One
I say I’m alone sort of, as Michelle’s Mum and Dad needed to come back to Sydney for a friends funeral and have kindly offered to stay for a bit longer to help Michelle and Eliza out while they are in the Hospital. It does however feel very weird not having them here and its is very quiet. Its lucky I got a few extra cuddles with Eliza before taking her to the hospital this afternoon.
Eliza may be in hospital for 10 days or more depending on how well all the tests go and how quickly she adapts to the bi-pap. Both Michelle and Eliza are going to want visitors so if you are thinking of heading out the details are as follows:
Ward: Hunter Baillie
Level 1 Westmead Children’s Hospital
Visiting Hours: 10am-12:00pm and 2:00pm – 7.30pm
Phone: 9845-1569 (direct to room)
9845-1113 (ward)
It might be worth a quick call to let them know you are coming as she has a few tests that are being done at the same time and may not be there all the time. Hope to see you soon.
Regards
Darren
The two girls in my life have deserted me again. Eliza is back at Westmead hospital to have a Bi-Pap machine calibrated to her needs and Michelle is staying out there with her. For those of you wondering what the hell Bi-Pap is (and I would have been one of you prior to Eliza’ arrival), it is a machine that provides both I-Pap and E-Pap (clear as mud ). Seriously, The I is for inhale and E for exhale and the Pap is Positive Airway Pressure, so in effect it provides help with both the breathing in and out, although the machine doesn’t breathe for her, it help her to complete each breath and to ensure that she doesn’t apnoea. She only needs this while she is asleep and it will hopefully help her to avoid some of the side effects from the apnoea’s that are currently interrupting her sleep such as CO2 build-up and lack of REM sleep. They also hope it will help her to start breathing a bit deeper and slower than she currently does even when awake.
Her first attempt with the bi-pap has been a bit rough and Eliza was very upset when I left the hospital, but Michelle called me later in the evening to tell me that she had finally fallen asleep about 30 mins after I left and that she was breathing in Sync with the machine, so that in itself is a good sign.
It was kind of funny tonight, Michelle and I had discussed how every time Eliza tries to sleep in a hospital a Doctor comes in and wants to examine her, then once you get rid of that lot, the next lot come in when she is due to be fed, delaying her feed. By the end of it we are left with a screaming, tired and hungry mess to deal with. Well it happened again tonight, although at feed time it was only a couple of student doctors and they turned and ran after being told about her propensity to chuck up if disturbed during feeds. Student Doctors Nil, Eliza One
I say I’m alone sort of, as Michelle’s Mum and Dad needed to come back to Sydney for a friends funeral and have kindly offered to stay for a bit longer to help Michelle and Eliza out while they are in the Hospital. It does however feel very weird not having them here and its is very quiet. Its lucky I got a few extra cuddles with Eliza before taking her to the hospital this afternoon.
Eliza may be in hospital for 10 days or more depending on how well all the tests go and how quickly she adapts to the bi-pap. Both Michelle and Eliza are going to want visitors so if you are thinking of heading out the details are as follows:
Ward: Hunter Baillie
Level 1 Westmead Children’s Hospital
Visiting Hours: 10am-12:00pm and 2:00pm – 7.30pm
Phone: 9845-1569 (direct to room)
9845-1113 (ward)
It might be worth a quick call to let them know you are coming as she has a few tests that are being done at the same time and may not be there all the time. Hope to see you soon.
Regards
Darren
Wednesday, May 26, 2004
The Latest on Eliza
Hi Everyone
Eliza went to see the Renal and Respiratory Specialists today with mixed results. The renal reflux is not as bad as first thought although she will have to be monitored every couple of months for the next few years to make sure that it corrects itself. She also needs to have another test to ensure there is no kidney damage, but this is just a precaution at the moment. The bad news comes from the results of her sleep study which were quite abnormal. She apparently has up to 30 episodes an hour where she either stops breathing or has her breathing blocked for up to 14 seconds at a time. The tests also show that she is not reaching REM sleep very often and in babies they should be in REM sleep for up to 75% of the time. This means that she will need to start using a bi-pap machine to help her breathe during the night. Bi-pap doesn’t breathe for her, but it provides pressure to help with each breath. It isn’t an absolute necessity, but the Doctor warned that she may have development delays and other damage if she doesn’t get decent uninterrupted sleep and it will also affect her energy levels due to the carbon dioxide build up in her system.
She will need to go into hospital for 10 days to get everything fitted and have the machine set up and Michelle will stay with her at the hospital during this time. (probably from the 8th June). Unfortunately this means that she will need to stop using the Nasal Gastric tube and have it replaced with a Gastrostomy tube (stomach tube) which will mean having another operation and going through all the risks from the anaesthetic. This may take several months apparently before it happens. There is also the chance that having the G-tube will cause stomach reflux and she may also have to have another operation known as a fundoplication (which involves tightening the muscle at the top of the stomach). This is more involved than the G-tube and can take up to three hours of surgery and is done by laparoscopy. Hopefully it is something she can avoid, but with everything else I won’t be surprised.
We are just waiting on the results of another blood test done today and if it is clear we can start her on the tyrosine which will hopefully have some good effects (she could do with some good news as could we). She has also managed to start lifting her right leg over the past few days (previously she was only lifting the left one) so her motor skills are getting better in her distal muscles (now we hope the proximal muscles will catch up).
I have finally finished the updates to Eliza’s webpage and it should be a bit easier to navigate and there are a number of new pictures up (Each picture on the photo album page links to another group of pics so have a look at each of them) (users.bigpond.net.au/langerdotcom). We will be away from May 30 until June 4 visiting the Barrington Tops region so hopefully a week away from all the doctors and a bit of fresh air will do us all some good.
Best wishes
Darren
Eliza went to see the Renal and Respiratory Specialists today with mixed results. The renal reflux is not as bad as first thought although she will have to be monitored every couple of months for the next few years to make sure that it corrects itself. She also needs to have another test to ensure there is no kidney damage, but this is just a precaution at the moment. The bad news comes from the results of her sleep study which were quite abnormal. She apparently has up to 30 episodes an hour where she either stops breathing or has her breathing blocked for up to 14 seconds at a time. The tests also show that she is not reaching REM sleep very often and in babies they should be in REM sleep for up to 75% of the time. This means that she will need to start using a bi-pap machine to help her breathe during the night. Bi-pap doesn’t breathe for her, but it provides pressure to help with each breath. It isn’t an absolute necessity, but the Doctor warned that she may have development delays and other damage if she doesn’t get decent uninterrupted sleep and it will also affect her energy levels due to the carbon dioxide build up in her system.
She will need to go into hospital for 10 days to get everything fitted and have the machine set up and Michelle will stay with her at the hospital during this time. (probably from the 8th June). Unfortunately this means that she will need to stop using the Nasal Gastric tube and have it replaced with a Gastrostomy tube (stomach tube) which will mean having another operation and going through all the risks from the anaesthetic. This may take several months apparently before it happens. There is also the chance that having the G-tube will cause stomach reflux and she may also have to have another operation known as a fundoplication (which involves tightening the muscle at the top of the stomach). This is more involved than the G-tube and can take up to three hours of surgery and is done by laparoscopy. Hopefully it is something she can avoid, but with everything else I won’t be surprised.
We are just waiting on the results of another blood test done today and if it is clear we can start her on the tyrosine which will hopefully have some good effects (she could do with some good news as could we). She has also managed to start lifting her right leg over the past few days (previously she was only lifting the left one) so her motor skills are getting better in her distal muscles (now we hope the proximal muscles will catch up).
I have finally finished the updates to Eliza’s webpage and it should be a bit easier to navigate and there are a number of new pictures up (Each picture on the photo album page links to another group of pics so have a look at each of them) (users.bigpond.net.au/langerdotcom). We will be away from May 30 until June 4 visiting the Barrington Tops region so hopefully a week away from all the doctors and a bit of fresh air will do us all some good.
Best wishes
Darren
Friday, May 21, 2004
Quick Update on Eliza
Hi Everyone
Just a quick note to let you know that Eliza went back to see the Neurologist and had her first Physiotherapy assessment on Wednesday. Both were very happy with her progress and she has made some impressive improvements over the past two weeks. The physio is going to investigate us taking her to the hydrotherapy pool at RNS as she thinks this is the best form of exercise and therapy she can get at this age. They don’t recommend to much else as they don’t think they get much benefit until they are 12 months old (then we get to turn her into a pretzel :-)). It will be exciting to see how she handles her first experience in so much water as she is finding the bath a little restricting these days and “needs room to expand”.
The Neurologist was also impressed at how well she is doing compared to her last visit. They are now going to put her into their worldwide trial of an amino acid called L-tyrosine. Anecdotally, this has helped some NM sufferers to reduce the amount of secretions they develop, improve their energy levels and strength as well as improve their weight gain and appetite. If it only does a few of these things and only marginally it will still make a big difference to her. We are keeping everything crossed that it helps. She should start on this next week if all goes to plan. We did get one semi bad piece of news in that the results of her DNA tests were negative for an abnormality in the actin gene (if present this would have allowed us to test for it very early on in any other pregnancies). They are now almost certain that her condition is inherited recessively and her DNA will be sent to Finland now to see if they can identify one of the other 4 genes that might be causing the problem. Unfortunately due to the complexity of the genes its unlikely they will identify the actual cause (but it all helps with their data collection for further research). It means that we probably have a 25% chance of having another baby with the same problem and we will need to think long and hard if we want to risk that again. Despite how wonderful Eliza is, and how much she means to us, it is extremely difficult to think of putting another child through this and it will be a tough decision either way.
Tomorrow she is off to get her six month vaccinations and then next week the renal specialist and the respiratory specialist (for the sleep study results). Hopefully the week after we are going to get a weeks break and go away at least for a few days before it all starts again in mid-June.
I hope all of you and your families are well and I hope to hear from you soon.
Regards
Darren
PS Eliza turned 6 months old on Wednesday, she is growing up way too fast! I’ve also started to build a new website so check out the progress (not much yet) at users.bigpond.net.au/langerdotcom
Just a quick note to let you know that Eliza went back to see the Neurologist and had her first Physiotherapy assessment on Wednesday. Both were very happy with her progress and she has made some impressive improvements over the past two weeks. The physio is going to investigate us taking her to the hydrotherapy pool at RNS as she thinks this is the best form of exercise and therapy she can get at this age. They don’t recommend to much else as they don’t think they get much benefit until they are 12 months old (then we get to turn her into a pretzel :-)). It will be exciting to see how she handles her first experience in so much water as she is finding the bath a little restricting these days and “needs room to expand”.
The Neurologist was also impressed at how well she is doing compared to her last visit. They are now going to put her into their worldwide trial of an amino acid called L-tyrosine. Anecdotally, this has helped some NM sufferers to reduce the amount of secretions they develop, improve their energy levels and strength as well as improve their weight gain and appetite. If it only does a few of these things and only marginally it will still make a big difference to her. We are keeping everything crossed that it helps. She should start on this next week if all goes to plan. We did get one semi bad piece of news in that the results of her DNA tests were negative for an abnormality in the actin gene (if present this would have allowed us to test for it very early on in any other pregnancies). They are now almost certain that her condition is inherited recessively and her DNA will be sent to Finland now to see if they can identify one of the other 4 genes that might be causing the problem. Unfortunately due to the complexity of the genes its unlikely they will identify the actual cause (but it all helps with their data collection for further research). It means that we probably have a 25% chance of having another baby with the same problem and we will need to think long and hard if we want to risk that again. Despite how wonderful Eliza is, and how much she means to us, it is extremely difficult to think of putting another child through this and it will be a tough decision either way.
Tomorrow she is off to get her six month vaccinations and then next week the renal specialist and the respiratory specialist (for the sleep study results). Hopefully the week after we are going to get a weeks break and go away at least for a few days before it all starts again in mid-June.
I hope all of you and your families are well and I hope to hear from you soon.
Regards
Darren
PS Eliza turned 6 months old on Wednesday, she is growing up way too fast! I’ve also started to build a new website so check out the progress (not much yet) at users.bigpond.net.au/langerdotcom
Monday, May 10, 2004
Update on Eliza
Hi Everyone
The whirl of doctors appointments that are fast becoming our main family activity have started with Eliza being subjected to a barium swallow test and a sleep study today (not to mention a quick trip to the respiratory specialist as well). Unfortunately the news on her swallow test was not that good and they have postponed any further attempts at feeding her orally for another 3 months. It was very clear from the video x-ray that she still doesn’t have the coordination to swallow safely at the moment. Some of the food went down the oesophagus correctly, however there was a fair amount that was aspirated into her airway (she was still brining stuff up and coughing several hours later). Too much aspiration can cause serious chest infections and something everyone wishes to avoid. We can only hope that when she gets a bit older and she is able to control her muscles a bit better she will be able to coordinate her swallow. The alternative will mean more operations and being fed by a stomach tube.
Michelle and Eliza are still at Westmead hospital tonight while they conduct the sleep study and we should get the results of that test later on in the month (it’s very quiet at home tonight :-)). The last time I saw Eliza she looked like something out of a bad sci-fi/horror film. She had electrodes and wires all over her head, chest and abdomen, nasal prongs and green marker spots all over her head (which is also covered in white glue they use to stick the probes to her scalp). She tolerated this fairly well until they started sticking the head probes on. She got more and more upset and then threw up all over me (Linda Blair has nothing on Eliza when she is sick mode). Needless to say I was very happy to get home and get changed as the dampness and smell were not very pleasant. After all of that we finally got her to bed and she spent a while being fascinated by all the coloured wires and then attempting to pull her nasal prongs out (which was quite funny as they were taped to her face and she could only pull them down onto her upper lip making her look like a walrus :-) ). If she didn’t go to sleep quickly I think she will keep the nurses busy as all those wires are way too tempting for a baby to leave alone.
In general she has been doing quite well recently and is getting more movement all the time (although it is still difficult for both of us to get enough sleep). She is now lifting her legs against gravity and she is able to roll from her right side onto her back without any help. Its very slow progress but you can really see her trying to do things now. She has also stated grabbing and pushing her toys with her hands, which at times giver her an enormous amount of delight. Her bath times though are where she is making the biggest improvements. The buoyancy makes a big difference to her and she is able to try different things she doesn’t have the strength for out of the water. She is even getting her arms and legs coordinated enough to splash and make swimming strokes. She has even started pushing off the sides (and the bottom) of the bath with her legs. She gets very excited when I’m there for bath time and tries to show off, which occasionally turns to tragedy when she swallows (sort of gurgles anyway) a mouthful of water. Its truly a joy to watch her when she is that happy (I still struggle a bit to pick a smile from a grimace with her and we are still not sure I she laughs but there is no mistaking the pleasure she gets from doing things that normally are too hard under full gravity).
Next week we are back to see the Neurologist and then for a physiotherapy assessment. The week after its back to the respiratory specialist for the sleep results and then top the renal specialist to see what can be done about her urinary tract problems. We are hoping to have a short holiday in the first week of June and take Eliza up the coast for a few days. Hopefully she will manage to stay well enough for this to happen as we could all do with the break :-)
I better stop rambling as I need to be up at 6.00am to pick Eliza and Michelle up from the hospital (Not happy about that at all, knowing Eliza she won’t be thrilled either).
Regards
Darren
The whirl of doctors appointments that are fast becoming our main family activity have started with Eliza being subjected to a barium swallow test and a sleep study today (not to mention a quick trip to the respiratory specialist as well). Unfortunately the news on her swallow test was not that good and they have postponed any further attempts at feeding her orally for another 3 months. It was very clear from the video x-ray that she still doesn’t have the coordination to swallow safely at the moment. Some of the food went down the oesophagus correctly, however there was a fair amount that was aspirated into her airway (she was still brining stuff up and coughing several hours later). Too much aspiration can cause serious chest infections and something everyone wishes to avoid. We can only hope that when she gets a bit older and she is able to control her muscles a bit better she will be able to coordinate her swallow. The alternative will mean more operations and being fed by a stomach tube.
Michelle and Eliza are still at Westmead hospital tonight while they conduct the sleep study and we should get the results of that test later on in the month (it’s very quiet at home tonight :-)). The last time I saw Eliza she looked like something out of a bad sci-fi/horror film. She had electrodes and wires all over her head, chest and abdomen, nasal prongs and green marker spots all over her head (which is also covered in white glue they use to stick the probes to her scalp). She tolerated this fairly well until they started sticking the head probes on. She got more and more upset and then threw up all over me (Linda Blair has nothing on Eliza when she is sick mode). Needless to say I was very happy to get home and get changed as the dampness and smell were not very pleasant. After all of that we finally got her to bed and she spent a while being fascinated by all the coloured wires and then attempting to pull her nasal prongs out (which was quite funny as they were taped to her face and she could only pull them down onto her upper lip making her look like a walrus :-) ). If she didn’t go to sleep quickly I think she will keep the nurses busy as all those wires are way too tempting for a baby to leave alone.
In general she has been doing quite well recently and is getting more movement all the time (although it is still difficult for both of us to get enough sleep). She is now lifting her legs against gravity and she is able to roll from her right side onto her back without any help. Its very slow progress but you can really see her trying to do things now. She has also stated grabbing and pushing her toys with her hands, which at times giver her an enormous amount of delight. Her bath times though are where she is making the biggest improvements. The buoyancy makes a big difference to her and she is able to try different things she doesn’t have the strength for out of the water. She is even getting her arms and legs coordinated enough to splash and make swimming strokes. She has even started pushing off the sides (and the bottom) of the bath with her legs. She gets very excited when I’m there for bath time and tries to show off, which occasionally turns to tragedy when she swallows (sort of gurgles anyway) a mouthful of water. Its truly a joy to watch her when she is that happy (I still struggle a bit to pick a smile from a grimace with her and we are still not sure I she laughs but there is no mistaking the pleasure she gets from doing things that normally are too hard under full gravity).
Next week we are back to see the Neurologist and then for a physiotherapy assessment. The week after its back to the respiratory specialist for the sleep results and then top the renal specialist to see what can be done about her urinary tract problems. We are hoping to have a short holiday in the first week of June and take Eliza up the coast for a few days. Hopefully she will manage to stay well enough for this to happen as we could all do with the break :-)
I better stop rambling as I need to be up at 6.00am to pick Eliza and Michelle up from the hospital (Not happy about that at all, knowing Eliza she won’t be thrilled either).
Regards
Darren
Thursday, April 22, 2004
Eliza's Christening
Hi everyone
Attached are some photo’s from Eliza’s Christening. We hope you all had a good time. Eliza really enjoyed her presents and we had a good time opening everything :-) ! (even though you were all very bad in getting them in the first place). (If you can’t work a zip file let me know and I’ll send the pics individually).
We got a bit of bad news today when the scans she had confirmed that Eliza has Renal Reflux (the cause of her recent urinary tract infection) . This is caused by urine flowing back from the bladder to the kidneys. Left untreated this can cause kidney damage, but at this stage we don’t know how serious it is or what they have to do to fix it. We also don’t know if its related to the myopathy or if its something unrelated. Eliza is sleeping a bit better this week, although is still more unsettled than before her recent stay in hospital so sleep for Michelle and myself is at a premium and we are both showing signs of falling apart (more bloody doctors bills). I’m not sure what we do if one of us gets sick, but the strain of the past few months is taking its toll.
Next week we are off to see the paediatrician again and the week after she is having the barium swallow test. We hope that this test gives us some good news, but she is still having a lot of problems with secretions so we are not that hopeful. There is some good news in that she is using her hands to grab things now and push things away and she had discovered how to lift her legs up in the air from time to time. Unfortunately this means she can grab her feeding tube now and she has managed to pull it out once already in the past week She is also becoming very aware of all the things that are happening to her which can be a bit distressing at times as she knows now when something is going to unpleasant (like putting a tube back in).
We really enjoyed catching up with most of you over the weekend and hope we can do it again soon.
regards
Darren and Michelle
Attached are some photo’s from Eliza’s Christening. We hope you all had a good time. Eliza really enjoyed her presents and we had a good time opening everything :-) ! (even though you were all very bad in getting them in the first place). (If you can’t work a zip file let me know and I’ll send the pics individually).
We got a bit of bad news today when the scans she had confirmed that Eliza has Renal Reflux (the cause of her recent urinary tract infection) . This is caused by urine flowing back from the bladder to the kidneys. Left untreated this can cause kidney damage, but at this stage we don’t know how serious it is or what they have to do to fix it. We also don’t know if its related to the myopathy or if its something unrelated. Eliza is sleeping a bit better this week, although is still more unsettled than before her recent stay in hospital so sleep for Michelle and myself is at a premium and we are both showing signs of falling apart (more bloody doctors bills). I’m not sure what we do if one of us gets sick, but the strain of the past few months is taking its toll.
Next week we are off to see the paediatrician again and the week after she is having the barium swallow test. We hope that this test gives us some good news, but she is still having a lot of problems with secretions so we are not that hopeful. There is some good news in that she is using her hands to grab things now and push things away and she had discovered how to lift her legs up in the air from time to time. Unfortunately this means she can grab her feeding tube now and she has managed to pull it out once already in the past week She is also becoming very aware of all the things that are happening to her which can be a bit distressing at times as she knows now when something is going to unpleasant (like putting a tube back in).
We really enjoyed catching up with most of you over the weekend and hope we can do it again soon.
regards
Darren and Michelle
Thursday, March 25, 2004
Eliza - Update (no you are not seeing double)
Hi Everyone
Eliza’s health has improved again and hopefully she will be released from hospital tomorrow morning . The tests showed that she has a Urinary Tract infection and not a chest infection which although uncomfortable for her is a huge relief to Michelle and I. She also has a cold, but seems to have gotten over that as well. She needs to keep taking a course of antibiotics, but that seems to be the worst of it for now. In hindsight she probably didn’t need to go into hospital, but by the time you finish reading this note, you’ll probably understand why its so important to make sure she avoid pneumonia at all costs.
We also spent the afternoon out at Westmead Hospital with Dr Katherine North, the neuromuscular specialist in Nemaline myopathies. Although she didn’t tell us a lot that we didn’t already know, she was able to clarify a few things for us. Although Eliza’s results are atypical for Nemaline, she believes Eliza has Nemaline or a derivative of it. She is currently waiting on the results of some DNA tests which will be completed in the next 2 months as well as the electron microscopy pictures (although we have a report on the results of the electron microscopy, she hasn’t seen the actual pictures and believes they will shed further light on things). The DNA tests are looking to identify the actual Gene causing the problem. This won’t help Eliza, but may make it possible to identify if the mutation was sporadic or recessive and to test for the disease in future pregnancies (assuming we decide we want to go ahead with any others). There are 5 known genes that can cause Nemaline Myopathy, this test will only check for one of these, the actin gene and there is only a 20% probability that it will be positive. This is the simplest of the 5 genes to check and the only one they will be able to test for in a future pregnancy. If this test is negative then her results will be sent to Finland to try and identify which of the other 4 genes might be responsible in Eliza (they believe there may be other genes that can cause the problem but haven’t identified them yet). Although a lot of research is being done on these diseases, they are still 10-15 years away from any major breakthroughs or treatments and it is far more important to help Eliza cope with things as they are now.
Dr North was able to give us an idea of Eliza’s future prognosis as well as get her into the Neuromuscular Clinics programs for treatment and long term management. She believes that most children who survive continue to improve as they get older. The biggest danger period is the first 2 years of life and that is from respiratory failure (mostly due to pneumonia). As such most of her treatment will initially involve keeping her lungs and airways healthy and to monitor any signs of change in her ability to breathe. Eliza has not shown any difficulties in breathing thus far and that is a good sign, but there may be small problems lurking that may not be identified just by looking. In the next two months they will arrange for Eliza to do a sleep study to identify any breathing problems she might have (although she was pleased at how well Eliza was breathing when asleep when she gave a demo during the consultation – I guess Eliza already knows all this stuff and bores easily ) Also during this period they will start to get her into physiotherapy and to meet all the specialists that will be treating her from now on (and there is a lot of them). Once she has turned 6 months they will start to look at other treatments such as occupational therapy, more intensive speech therapy and others when they will be more beneficial. They will also organise a yearly clinic where all the people treating Eliza come together and share all their information on her to avoid things falling through the cracks. She has also mentioned starting Eliza on an amino acid called Tyrosine. I have read a lot about this and couldn’t come up with any conclusive evidence that it helps with Nemaline myopathy, she confirmed that there are no clinical studies at the moment, but they are currently conducting one. They however have anecdotal evidence that it helps, so Michelle and I have to think about whether to agree to it or not. One side affect some people get is severe headaches, but none of her patients have experienced this so I’m not sure its worth it until Eliza can tell us if it causes any pain, but if it helps then we probably should do it (who would choose to be a parent ). All in all it was a very good experience and will hopefully do everything to ensure Eliza manages as fulfilling life as possible (at least from a heath perspective).
She reiterated something we probably already knew, but was very comforting to hear from someone else. Eliza is never going to be strong or athletic, but that the most important things in life such as her personality and mind are perfectly in tact and although it may take a little while longer for her to achieve certain milestones she will eventually get there. Her problem is purely mechanical in nature and all her treatment needs have the one goal of keeping her healthy and unlocking her ability to use her mind and personality and not get too hung up on the things she most likely will never be able to do.
The best thing we can do as parents (and you guys as family and friends) is keep her healthy and help her achieve as much as she can at her own pace and hopefully protect her from some of the small minded people out there who won’t be able to see the person behind the disability. I could probably get up on my soap box a bit more about that, but I’m sure you know what I mean Anyway things keep looking brighter all the time and fingers crossed will continue to be that way, but as the cliché goes “its going to be a long road”
Regards
Darren
Eliza’s health has improved again and hopefully she will be released from hospital tomorrow morning . The tests showed that she has a Urinary Tract infection and not a chest infection which although uncomfortable for her is a huge relief to Michelle and I. She also has a cold, but seems to have gotten over that as well. She needs to keep taking a course of antibiotics, but that seems to be the worst of it for now. In hindsight she probably didn’t need to go into hospital, but by the time you finish reading this note, you’ll probably understand why its so important to make sure she avoid pneumonia at all costs.
We also spent the afternoon out at Westmead Hospital with Dr Katherine North, the neuromuscular specialist in Nemaline myopathies. Although she didn’t tell us a lot that we didn’t already know, she was able to clarify a few things for us. Although Eliza’s results are atypical for Nemaline, she believes Eliza has Nemaline or a derivative of it. She is currently waiting on the results of some DNA tests which will be completed in the next 2 months as well as the electron microscopy pictures (although we have a report on the results of the electron microscopy, she hasn’t seen the actual pictures and believes they will shed further light on things). The DNA tests are looking to identify the actual Gene causing the problem. This won’t help Eliza, but may make it possible to identify if the mutation was sporadic or recessive and to test for the disease in future pregnancies (assuming we decide we want to go ahead with any others). There are 5 known genes that can cause Nemaline Myopathy, this test will only check for one of these, the actin gene and there is only a 20% probability that it will be positive. This is the simplest of the 5 genes to check and the only one they will be able to test for in a future pregnancy. If this test is negative then her results will be sent to Finland to try and identify which of the other 4 genes might be responsible in Eliza (they believe there may be other genes that can cause the problem but haven’t identified them yet). Although a lot of research is being done on these diseases, they are still 10-15 years away from any major breakthroughs or treatments and it is far more important to help Eliza cope with things as they are now.
Dr North was able to give us an idea of Eliza’s future prognosis as well as get her into the Neuromuscular Clinics programs for treatment and long term management. She believes that most children who survive continue to improve as they get older. The biggest danger period is the first 2 years of life and that is from respiratory failure (mostly due to pneumonia). As such most of her treatment will initially involve keeping her lungs and airways healthy and to monitor any signs of change in her ability to breathe. Eliza has not shown any difficulties in breathing thus far and that is a good sign, but there may be small problems lurking that may not be identified just by looking. In the next two months they will arrange for Eliza to do a sleep study to identify any breathing problems she might have (although she was pleased at how well Eliza was breathing when asleep when she gave a demo during the consultation – I guess Eliza already knows all this stuff and bores easily ) Also during this period they will start to get her into physiotherapy and to meet all the specialists that will be treating her from now on (and there is a lot of them). Once she has turned 6 months they will start to look at other treatments such as occupational therapy, more intensive speech therapy and others when they will be more beneficial. They will also organise a yearly clinic where all the people treating Eliza come together and share all their information on her to avoid things falling through the cracks. She has also mentioned starting Eliza on an amino acid called Tyrosine. I have read a lot about this and couldn’t come up with any conclusive evidence that it helps with Nemaline myopathy, she confirmed that there are no clinical studies at the moment, but they are currently conducting one. They however have anecdotal evidence that it helps, so Michelle and I have to think about whether to agree to it or not. One side affect some people get is severe headaches, but none of her patients have experienced this so I’m not sure its worth it until Eliza can tell us if it causes any pain, but if it helps then we probably should do it (who would choose to be a parent ). All in all it was a very good experience and will hopefully do everything to ensure Eliza manages as fulfilling life as possible (at least from a heath perspective).
She reiterated something we probably already knew, but was very comforting to hear from someone else. Eliza is never going to be strong or athletic, but that the most important things in life such as her personality and mind are perfectly in tact and although it may take a little while longer for her to achieve certain milestones she will eventually get there. Her problem is purely mechanical in nature and all her treatment needs have the one goal of keeping her healthy and unlocking her ability to use her mind and personality and not get too hung up on the things she most likely will never be able to do.
The best thing we can do as parents (and you guys as family and friends) is keep her healthy and help her achieve as much as she can at her own pace and hopefully protect her from some of the small minded people out there who won’t be able to see the person behind the disability. I could probably get up on my soap box a bit more about that, but I’m sure you know what I mean Anyway things keep looking brighter all the time and fingers crossed will continue to be that way, but as the cliché goes “its going to be a long road”
Regards
Darren
Tuesday, March 23, 2004
Eliza - Back in Hospital and Christening
Hi Everyone
Unfortunately Eliza is back in hospital tonight. She has had a temperature on and off for the past week but hadn’t really shown too many signs of being distressed, last night however her temperature hit 38.6C and wouldn’t go back down again and she was getting quite distressed, so at about 5.30am we made a dash to the emergency department at Royal North Shore. They ran a few tests and decided that she needed to be admitted even before getting the results. So far they don’t have anything positive, although they have ruled out several of the more nasty viruses doing the rounds at the moment. They also did a chest x-ray which the emergency doctors thought showed signs of bronchiolitis or pneumonia, but Eliza’s paediatrician didn’t think that was the case and that we may have gotten her there before anything too nasty had started to develop. At the moment the guess is she has a cold with a secondary urinary tract infection (her white blood cell count is quite high), but we are still waiting on some blood cultures and a few other tests before they will definitely rule pneumonia out.
Eliza has had a tough day (not to mention Michelle who had been up all night looking after her), she has been poked, prodded, jabbed and examined in more places that any self respecting lady should have to put up with and had been getting decidedly more stroppy after each episode, particularly as it seemed that she had just gone to sleep minutes before being disturbed each time. Thankfully once she was admitted to the ward (Room 4, Bed 5, 5th floor Paediatrics Ward if you want to visit) she settled down and got some sleep. Some medical students thought she would be interesting to examine as her condition is rarely seen, but I think they got more than they bargained for as Eliza got quite upset and needed a lot of suctioning and I think they were quite happy to leave the room by the end of it as she was wailing and coughing and carrying on. She is still quite unsettled at times and has been crying and moaning in her sleep so there is definitely something going on with her more than a cold. The doctors have told us that if it is just viral she will be released in a day or two, if its bacterial then it could be longer depending on how well she responds to the antibiotics. Michelle is staying at the hospital overnight with her as we don’t want her to suddenly wake up in the middle of the night in a strange place all by herself, particularly if she isn’t feeling well. There is no phone on in the room, but Michelle has her mobile (0412-206-212). If you can’t get her give me a call on (0412-206-209). She is quite tired so don’t call too early in the morning! Eliza is supposed to have her appointment at the neuromuscular clinic tomorrow out at Westmead and thankfully unless she is too sick to travel we are allowed to take her out on a day pass as long as we bring her back to RNSH (one might consider going from one hospital to another as not much of a pass, but I’m sure Eliza will enjoy the ride). We are still hoping that this appointment may give us a clearer understanding of what is actually wrong with her (or at least clarifying all the educated guesses) and give us an idea of what her likely prognosis is long term and what research is being done that may one day help her.
We have also set a final date for her Christening and you and your families are all invited. It will be Sunday 18 April 2004 at 3.00pm at St Teresa’s, Mascot (corner Sutherland Street and Coward Street) and then afterwards for the party we have been promising for so long at my parents house (32 Rolfe Street Mascot from 3.30pm or whenever the christening finishes). We are going to put on an early dinner BBQ and drinks (so its not too late for any of the kids that come along) so please bring yourselves along and nothing else and we can all finally celebrate her birth properly. (We will fully understand if you don’t want to go to the church service, but no excuses in missing the party unless you are overseas or interstate ). I’m going to be cheap and not do up formal invitations, so please respond to this email and let me know if you can make it (so I know how much grog to buy ). The three of us have appreciated all your support over the past few months and we really hope you can make it. ( I also warn anyone attending that Langer BBQ’s generally involve lots of rain, so an umbrella may be wise!).
I’ll write soon on Eliza’s condition and expect to see lots of RSVP’s in my inbox.
Regards
Darren
Unfortunately Eliza is back in hospital tonight. She has had a temperature on and off for the past week but hadn’t really shown too many signs of being distressed, last night however her temperature hit 38.6C and wouldn’t go back down again and she was getting quite distressed, so at about 5.30am we made a dash to the emergency department at Royal North Shore. They ran a few tests and decided that she needed to be admitted even before getting the results. So far they don’t have anything positive, although they have ruled out several of the more nasty viruses doing the rounds at the moment. They also did a chest x-ray which the emergency doctors thought showed signs of bronchiolitis or pneumonia, but Eliza’s paediatrician didn’t think that was the case and that we may have gotten her there before anything too nasty had started to develop. At the moment the guess is she has a cold with a secondary urinary tract infection (her white blood cell count is quite high), but we are still waiting on some blood cultures and a few other tests before they will definitely rule pneumonia out.
Eliza has had a tough day (not to mention Michelle who had been up all night looking after her), she has been poked, prodded, jabbed and examined in more places that any self respecting lady should have to put up with and had been getting decidedly more stroppy after each episode, particularly as it seemed that she had just gone to sleep minutes before being disturbed each time. Thankfully once she was admitted to the ward (Room 4, Bed 5, 5th floor Paediatrics Ward if you want to visit) she settled down and got some sleep. Some medical students thought she would be interesting to examine as her condition is rarely seen, but I think they got more than they bargained for as Eliza got quite upset and needed a lot of suctioning and I think they were quite happy to leave the room by the end of it as she was wailing and coughing and carrying on. She is still quite unsettled at times and has been crying and moaning in her sleep so there is definitely something going on with her more than a cold. The doctors have told us that if it is just viral she will be released in a day or two, if its bacterial then it could be longer depending on how well she responds to the antibiotics. Michelle is staying at the hospital overnight with her as we don’t want her to suddenly wake up in the middle of the night in a strange place all by herself, particularly if she isn’t feeling well. There is no phone on in the room, but Michelle has her mobile (0412-206-212). If you can’t get her give me a call on (0412-206-209). She is quite tired so don’t call too early in the morning! Eliza is supposed to have her appointment at the neuromuscular clinic tomorrow out at Westmead and thankfully unless she is too sick to travel we are allowed to take her out on a day pass as long as we bring her back to RNSH (one might consider going from one hospital to another as not much of a pass, but I’m sure Eliza will enjoy the ride). We are still hoping that this appointment may give us a clearer understanding of what is actually wrong with her (or at least clarifying all the educated guesses) and give us an idea of what her likely prognosis is long term and what research is being done that may one day help her.
We have also set a final date for her Christening and you and your families are all invited. It will be Sunday 18 April 2004 at 3.00pm at St Teresa’s, Mascot (corner Sutherland Street and Coward Street) and then afterwards for the party we have been promising for so long at my parents house (32 Rolfe Street Mascot from 3.30pm or whenever the christening finishes). We are going to put on an early dinner BBQ and drinks (so its not too late for any of the kids that come along) so please bring yourselves along and nothing else and we can all finally celebrate her birth properly. (We will fully understand if you don’t want to go to the church service, but no excuses in missing the party unless you are overseas or interstate ). I’m going to be cheap and not do up formal invitations, so please respond to this email and let me know if you can make it (so I know how much grog to buy ). The three of us have appreciated all your support over the past few months and we really hope you can make it. ( I also warn anyone attending that Langer BBQ’s generally involve lots of rain, so an umbrella may be wise!).
I’ll write soon on Eliza’s condition and expect to see lots of RSVP’s in my inbox.
Regards
Darren
Tuesday, March 09, 2004
Eliza - Update
Hi Everyone
Its been a while since I sent an email, unfortunately the realities of going back to work and keeping Eliza entertained are taking up most of our time. I haven’t updated the website for a while but there are lots of new photos to put up so I’ll try and do some work this weekend so you can see how much she has grown and changed (I’ve attached a photo, but this is a nearly a month ago).
Eliza is continuing to develop well and since the last email has been back to see her paediatrician and had her first appointment with the speech therapist. The paediatrician was happy with the way she is going and even managed to discover that she now has some reflexes in her legs (previously she has shown little sign of any reflexes). He also did another ultrasound on her hips and they are now in the normal range so that’s also a good sign that she may manage to walk eventually. We have also managed to fatten her up a little and she is now well over 4.2 kg (9lb 3 oz), although in the past week I reckon she has put on a lot more as she is getting heavy to lift in her capsule (which she is fast outgrowing). She now registers on the weight charts on the very bottom of the normal range whereas she had always been below weight for her age. The meeting with the speech therapist was valuable and although she didn’t think Eliza was ready to start swallowing yet, she gave us a few exercises to do with her to try and help her get used to the idea. Things such as stroking the sides of her tongue and massaging under her jaw to help move her tongue forward as well as stroking around her mouth. She has also got us putting a small amount of jam on her lips and tongue from time to time to stimulate her taste and mouth movement. One of the biggest obstacles she has in swallowing is not closing her mouth and until she starts doing that more regularly its unlikely she will show any improvement in this area. She is never going to have the same control that we do, but she needs to learn how to use what she does have. We go back at the beginning of April for another visit and hopefully she will see signs of improvement. Once the therapist is convinced Eliza is ready they will do a barium swallow test to se if she can get food in the right place, but that is still a way off yet. We have also started drip feeding her overnight (she gets the equivalent of 3 - 4 feeds over a 10-12 hour period) using a gadget called a kangaroo pump. It works like an IV drip and feeds her very slowly. The speech therapist thought it was better to give her more food overnight and less during the day so we had more time to work with her and just enjoy her company (hopefully it will mean we get more sleep too, but not so far as she still needs a bit of suctioning every few hours). She is also still enjoying her weekly Osteopath appointments and is seeing a physio once a month (she is very spoilt as both her Osteopath and physiotherapist make house calls just to see her). These both seem to help and she is moving a lot more than ever before.
We are slowly getting out and about with her more often now, although because of all the extra stuff we need to carry doing it on your own is a difficult thing. She seems to enjoy being in the car which is a good thing and we are heading off to Port Stephens this weekend for a work function and Eliza is tagging along for the ride. It’s a pity that she is still a bit young to go in the pool as I think her eyes will pop out when she sees that much water as she still really loves the bath and is kicking and splashing around really strongly now (I’ve taught her a few bad habits about making big splashes and water goes everywhere).
This past week has been a tough one for all of us as she had been bringing up a lot of her feeds, making everyone quite miserable. We originally though it was the after effects of a cold, but has since turned out that her feeding tube wasn’t down in her stomach sufficiently and that has been rectified today. I’m fairly certain Michelle would have liked to strangle her today as no longer had she got back from taking Eliza to the hospital to have it changed (she had her first train ride today), the little monkey managed to pull it out and we had to take her back to get it put back in again this evening. Hopefully tonight she will have a good sleep (and us too).
I was very proud of her on Sunday as she moved her head from the side to midline all by herself. We had her lying in a baby rocker (thanks Ben its been a great addition to Eliza’s therapy equipment) and as she normally does had her head turned to the side, then I started talking, standing in front of her and she rolled her head from the side to the midline and held it there so she could look at me. She had never done that before so it was nice to experience a first. Michelle also thinks she had her first laugh a few weeks ago (which naturally I missed), but she hasn’t repeated it since. There are lots of little signs of her getting bigger and more active and we just hope that it continues.
Michelle is well, although the lack of sleep is taking its toll. She is amazing with Eliza and manages to cope with the difficult things far better than I do (and with Eliza there are quite a few). Her patience and calmness in a crisis keeps both Eliza and myself from falling apart at times. I’m sure all babies are a handful, and at times more than that, but Eliza generates an enormous amount of extra work from all the exercises, cleaning and washing that she generates and Michelle does a wonderful job of juggling everything. A few people have mentioned how good the emails have been and I have felt a little guilty as all I’m doing is describing things, Michelle is doing the hard stuff and I’m very grateful for that.
One final thing, we hope to get Eliza Christened on the 21st of March. It will probably be at St Teresa’s at Mascot and drinks and nibbles back at my Mum and Dads afterwards so if you are free that day pencil it in (I’ll understand anyone who only wants to come for the drinks). I know its very short notice, but its probably the only time we can do it before Easter and I’ll try and send full details soon.
Until next time.
Darren
Its been a while since I sent an email, unfortunately the realities of going back to work and keeping Eliza entertained are taking up most of our time. I haven’t updated the website for a while but there are lots of new photos to put up so I’ll try and do some work this weekend so you can see how much she has grown and changed (I’ve attached a photo, but this is a nearly a month ago).
Eliza is continuing to develop well and since the last email has been back to see her paediatrician and had her first appointment with the speech therapist. The paediatrician was happy with the way she is going and even managed to discover that she now has some reflexes in her legs (previously she has shown little sign of any reflexes). He also did another ultrasound on her hips and they are now in the normal range so that’s also a good sign that she may manage to walk eventually. We have also managed to fatten her up a little and she is now well over 4.2 kg (9lb 3 oz), although in the past week I reckon she has put on a lot more as she is getting heavy to lift in her capsule (which she is fast outgrowing). She now registers on the weight charts on the very bottom of the normal range whereas she had always been below weight for her age. The meeting with the speech therapist was valuable and although she didn’t think Eliza was ready to start swallowing yet, she gave us a few exercises to do with her to try and help her get used to the idea. Things such as stroking the sides of her tongue and massaging under her jaw to help move her tongue forward as well as stroking around her mouth. She has also got us putting a small amount of jam on her lips and tongue from time to time to stimulate her taste and mouth movement. One of the biggest obstacles she has in swallowing is not closing her mouth and until she starts doing that more regularly its unlikely she will show any improvement in this area. She is never going to have the same control that we do, but she needs to learn how to use what she does have. We go back at the beginning of April for another visit and hopefully she will see signs of improvement. Once the therapist is convinced Eliza is ready they will do a barium swallow test to se if she can get food in the right place, but that is still a way off yet. We have also started drip feeding her overnight (she gets the equivalent of 3 - 4 feeds over a 10-12 hour period) using a gadget called a kangaroo pump. It works like an IV drip and feeds her very slowly. The speech therapist thought it was better to give her more food overnight and less during the day so we had more time to work with her and just enjoy her company (hopefully it will mean we get more sleep too, but not so far as she still needs a bit of suctioning every few hours). She is also still enjoying her weekly Osteopath appointments and is seeing a physio once a month (she is very spoilt as both her Osteopath and physiotherapist make house calls just to see her). These both seem to help and she is moving a lot more than ever before.
We are slowly getting out and about with her more often now, although because of all the extra stuff we need to carry doing it on your own is a difficult thing. She seems to enjoy being in the car which is a good thing and we are heading off to Port Stephens this weekend for a work function and Eliza is tagging along for the ride. It’s a pity that she is still a bit young to go in the pool as I think her eyes will pop out when she sees that much water as she still really loves the bath and is kicking and splashing around really strongly now (I’ve taught her a few bad habits about making big splashes and water goes everywhere).
This past week has been a tough one for all of us as she had been bringing up a lot of her feeds, making everyone quite miserable. We originally though it was the after effects of a cold, but has since turned out that her feeding tube wasn’t down in her stomach sufficiently and that has been rectified today. I’m fairly certain Michelle would have liked to strangle her today as no longer had she got back from taking Eliza to the hospital to have it changed (she had her first train ride today), the little monkey managed to pull it out and we had to take her back to get it put back in again this evening. Hopefully tonight she will have a good sleep (and us too).
I was very proud of her on Sunday as she moved her head from the side to midline all by herself. We had her lying in a baby rocker (thanks Ben its been a great addition to Eliza’s therapy equipment) and as she normally does had her head turned to the side, then I started talking, standing in front of her and she rolled her head from the side to the midline and held it there so she could look at me. She had never done that before so it was nice to experience a first. Michelle also thinks she had her first laugh a few weeks ago (which naturally I missed), but she hasn’t repeated it since. There are lots of little signs of her getting bigger and more active and we just hope that it continues.
Michelle is well, although the lack of sleep is taking its toll. She is amazing with Eliza and manages to cope with the difficult things far better than I do (and with Eliza there are quite a few). Her patience and calmness in a crisis keeps both Eliza and myself from falling apart at times. I’m sure all babies are a handful, and at times more than that, but Eliza generates an enormous amount of extra work from all the exercises, cleaning and washing that she generates and Michelle does a wonderful job of juggling everything. A few people have mentioned how good the emails have been and I have felt a little guilty as all I’m doing is describing things, Michelle is doing the hard stuff and I’m very grateful for that.
One final thing, we hope to get Eliza Christened on the 21st of March. It will probably be at St Teresa’s at Mascot and drinks and nibbles back at my Mum and Dads afterwards so if you are free that day pencil it in (I’ll understand anyone who only wants to come for the drinks). I know its very short notice, but its probably the only time we can do it before Easter and I’ll try and send full details soon.
Until next time.
Darren
Monday, February 16, 2004
Eliza - Week 2 - Guess who's 3 Months Old
Hi Everyone
Its hard to believe but on Thursday this week Eliza will be three months old. She is starting to get quite big now and filling out nicely. She is around 3.75Kg and 58cm long and she was the star graduate from the NICU putting on 205 grams since being discharged. Most of the other babies discharged at the same time had lost weight so the discharge nurses were very happy with her progress. She is still sleeping well, but has kept us on our toes, needing a bit more suctioning; we think due to the hot weather we are experiencing. The good part is that she can sleep through being suctioned, fed and having her nappy changed, the bad part is we can't and sleep has been difficult to come by for both of us. She has also pulled her feeding tube out twice in the past week (she had never done this while in hospital), so we had to make a trip back to the NICU each time to get a new one put in (The first time she did it was at 4.00am in the morning, thankfully tonight's effort was a bit earlier at 8.30pm). I have threatened to staple it to her face (only kidding...).
She is continuing to show signs of improvement in her arm and leg movements and is really loving the freedom her bath gives her each night (judging by the amount of screaming when I take her out), We will try soon to find somewhere for her to do some aqua therapy as it allows her to experience how her body should work and perhaps she can compensate a little as she gains more strength. She is still quite weal in the face and can't swallow, but the amount of secretions in general have dropped and we hope that she might be starting to swallow a little. We are also off to see her paediatrician on Tuesday afternoon, so it will be interesting to hear what he has to say. Hopefully he will have got all of the outstanding test results back by then and also have made appointments for us to see the speech therapist and the neuromuscular specialists at Westmead Children's Hospital. We still don't really know what is wrong with Eliza and may never have an exact diagnosis, but there are still a few things they need to rule out. If we don't get a diagnosis and her "Congenital Myopathy" is a new variant that hasn't been seen before we can just hope that she continues to improve over time and not regress and that one day she will be able to lead as normal a life as possible (whatever normal is : -) ). The one thing we need to be vigilant about is if she gets a cold or the flu. Pneumonia is her biggest danger at this stage and while we hope that you can all get to see her soon, we do ask that if you have a cold or flu to let us know so we can take necessary precautions. We are also trying to keep her isolated from other little children at present, so please don't be offended if we stop any of your children touching her for the next few months. It is purely a precaution and nothing personal. She is also getting her personal home therapy sessions with the osteopath and she seems to be getting some benefit from them, but its going to be something that takes a while and the osteopath is taking things very slowly to allow Eliza time to get used to it.
We went out for dinner on Friday night with some friends and we took Eliza along. She was exceptionally well behaved, but she is a big sticky beak. She wasn't happy until she was perched up on one of our shoulders so she could look around the room to see what all the noise was about. The restaurant was quite full and she wouldn't go back in her pram until she had done a full sweep of the room. Once that was done we managed to settle her down quite quickly and never heard a peep from her again all night. Well its back to work for me tomorrow and I am fairly sure I'm going to miss Eliza :-)
I had originally intended to stop sending the emails once we got Eliza home, but its probably the only time I get to speak with some of you these days and it has been a good diary of her life so far so I'm going to continue them for now. I also occasionally slip the odd comment onto the website which I want to keep a note of, but is not necessarily worthy of an entire email so all of the emails and notes are available in the update section on the website (which I need to update as we have a number of new photos that you might like to see). If you would rather not keep getting the emails just let me know and I'll take you off the list.
Hope you are all well.
Darren
Its hard to believe but on Thursday this week Eliza will be three months old. She is starting to get quite big now and filling out nicely. She is around 3.75Kg and 58cm long and she was the star graduate from the NICU putting on 205 grams since being discharged. Most of the other babies discharged at the same time had lost weight so the discharge nurses were very happy with her progress. She is still sleeping well, but has kept us on our toes, needing a bit more suctioning; we think due to the hot weather we are experiencing. The good part is that she can sleep through being suctioned, fed and having her nappy changed, the bad part is we can't and sleep has been difficult to come by for both of us. She has also pulled her feeding tube out twice in the past week (she had never done this while in hospital), so we had to make a trip back to the NICU each time to get a new one put in (The first time she did it was at 4.00am in the morning, thankfully tonight's effort was a bit earlier at 8.30pm). I have threatened to staple it to her face (only kidding...).
She is continuing to show signs of improvement in her arm and leg movements and is really loving the freedom her bath gives her each night (judging by the amount of screaming when I take her out), We will try soon to find somewhere for her to do some aqua therapy as it allows her to experience how her body should work and perhaps she can compensate a little as she gains more strength. She is still quite weal in the face and can't swallow, but the amount of secretions in general have dropped and we hope that she might be starting to swallow a little. We are also off to see her paediatrician on Tuesday afternoon, so it will be interesting to hear what he has to say. Hopefully he will have got all of the outstanding test results back by then and also have made appointments for us to see the speech therapist and the neuromuscular specialists at Westmead Children's Hospital. We still don't really know what is wrong with Eliza and may never have an exact diagnosis, but there are still a few things they need to rule out. If we don't get a diagnosis and her "Congenital Myopathy" is a new variant that hasn't been seen before we can just hope that she continues to improve over time and not regress and that one day she will be able to lead as normal a life as possible (whatever normal is : -) ). The one thing we need to be vigilant about is if she gets a cold or the flu. Pneumonia is her biggest danger at this stage and while we hope that you can all get to see her soon, we do ask that if you have a cold or flu to let us know so we can take necessary precautions. We are also trying to keep her isolated from other little children at present, so please don't be offended if we stop any of your children touching her for the next few months. It is purely a precaution and nothing personal. She is also getting her personal home therapy sessions with the osteopath and she seems to be getting some benefit from them, but its going to be something that takes a while and the osteopath is taking things very slowly to allow Eliza time to get used to it.
We went out for dinner on Friday night with some friends and we took Eliza along. She was exceptionally well behaved, but she is a big sticky beak. She wasn't happy until she was perched up on one of our shoulders so she could look around the room to see what all the noise was about. The restaurant was quite full and she wouldn't go back in her pram until she had done a full sweep of the room. Once that was done we managed to settle her down quite quickly and never heard a peep from her again all night. Well its back to work for me tomorrow and I am fairly sure I'm going to miss Eliza :-)
I had originally intended to stop sending the emails once we got Eliza home, but its probably the only time I get to speak with some of you these days and it has been a good diary of her life so far so I'm going to continue them for now. I also occasionally slip the odd comment onto the website which I want to keep a note of, but is not necessarily worthy of an entire email so all of the emails and notes are available in the update section on the website (which I need to update as we have a number of new photos that you might like to see). If you would rather not keep getting the emails just let me know and I'll take you off the list.
Hope you are all well.
Darren
