hi everyone
eli here...mum FINALLY let me get on and say hello...she reckons today is the best day that we have had yet so she let me on for a few minutes to say g'day.
i guess you already know that ive been a bit crook...some of the nurses reckon i look like someone who went to the tanning salon and it went REALLY wrong...mum tried to take a couple of pics of me, but they didnt work out so good. mum's calling me a little ooompalooompa but dad reckons im like a little cane toad...one of those tough little buggers you cant get rid of! I spose its better than being called a weed!
im feeling much better..sick enough to tell mum and dad i dont like vegies...but well enough to eat nearly a whole bag of twisties!
Twisties are bloody sensational...mum reckons i feel as passionately about twisties as she does about pina colada's - whatever they are :-)
im feeling ok...ive get a bit of a tummy ache every now and then and ive got weird things going on in my nappy as a result. the dr's have put me on some different medicines to try and clear up my tummy pain (and the nappy thing!)...so we will see if that is working or not in a few days.
Unfortunately we are pretty much back at square 1 with all of the tranfusions...whatever hit me has knocked my mojo around a bit and my platelets and blood have suffered, so im having lots of transfusions again.
im so special now that even my blood has to be warmed specially!
The liver queen came back for a visit last night and said that i was a very lucky little boy. My liver results are slowly trending down which is brilliant and im back to having a pick of things to eat. She said its going to take a while to get over this 'hit' and that im probably pretty lucky to be here at all. Very close call.
I feel like i have been on another planet for the past 2 weeks, and its only today that ive been able to sit up, watch mum and dad fuss over me like mad and take things in. i cant stay awake like i used to, coz i get pretty tired, but as mum keeps saying, its small steps...
mums looking cranky and she is telling me to get off the computer and have something to eat...ive got that nose tube in again to help me get my energy back. not to special for picking up chicks though...i think mum and dad are pretty keen to say goodbye to it, but it has been good getting some milk while i was sleeping all the time. i didnt feel like eating too much back then!
anyhoo..love to everyone. Ive been pretty lucky coz i had a visit from great nan and poppa from deniliquin, nana from bacchus marsh, kate and her mum b from home and tania from the leukaemia foundation...very special.
Micka from challenge has been keeping mum and dad entertained, and even bought in some krispy kreme donuts for them to munch on today...bloody sensational. i had a little bit but i was too full from all the twisties to eat too much!
mums cracking the whip, better fly before i get into real trouble!
love to all
eli
xox
Tuesday, October 28, 2008
Sunday, October 26, 2008
Small steps forward
Hi everyone
mum here...
today is sunday and thankfully eli is making tiny steps forward. One of his liver tests has come down heaps (one of the ones that was hugely worrying) however another one that tests the bilyrubin in his liver increased a bit yesterday. But for most of them, they are continuing to track down thank goodness.
He continues to sleep heaps, although probably a bit more alert between sleeps. After seeing him this morning, he is starting to move around the bed a little bit more...an indication that his tummy is probably not so sore from his operations the other day. He has had heaps of fluid on board - so much that the other day his right eye closed up because he was spending most of his time on it. It looked like we had given him a black eye poor little thing. But we noticed that with a few blood products, he was able to get rid of a heap of fluid yesterday, and pete said that he had a huge nappy overnight. all the signs we are looking for.
The other thing that has come out of the blue is that he has a 'cold' antigen on his blood! Not really sure what it means for him, but now when he gets a blood transfusion, they have to heat it up as it goes through his line. It was picked up on july 27 (round the same time as when he got really really sick and we were here for 5 weeks)...but he hasnt needed any bloods since then so it hasnt been found.
we only found out about 9.30pm last nite, so we are keen to ask the dr what is it is all about and whether it has any ongoing impacts on him.
Eli is also pretty dependent on magnesium transfusions, clotting transfusions (platelets/plasma and cryoprecipitate) as well as blood now and also has to be topped up with 30ml of potassium a day. apparently it tastes gross and eli puked it all up last night.
We are happy that he is feeling a little better and not so dependent on codeine which is a relief as we really want to leave his liver alone to help it get better.
anyways...as always we will keep you posted and chat with you soon.
luv to all
the simpsons
xox
mum here...
today is sunday and thankfully eli is making tiny steps forward. One of his liver tests has come down heaps (one of the ones that was hugely worrying) however another one that tests the bilyrubin in his liver increased a bit yesterday. But for most of them, they are continuing to track down thank goodness.
He continues to sleep heaps, although probably a bit more alert between sleeps. After seeing him this morning, he is starting to move around the bed a little bit more...an indication that his tummy is probably not so sore from his operations the other day. He has had heaps of fluid on board - so much that the other day his right eye closed up because he was spending most of his time on it. It looked like we had given him a black eye poor little thing. But we noticed that with a few blood products, he was able to get rid of a heap of fluid yesterday, and pete said that he had a huge nappy overnight. all the signs we are looking for.
The other thing that has come out of the blue is that he has a 'cold' antigen on his blood! Not really sure what it means for him, but now when he gets a blood transfusion, they have to heat it up as it goes through his line. It was picked up on july 27 (round the same time as when he got really really sick and we were here for 5 weeks)...but he hasnt needed any bloods since then so it hasnt been found.
we only found out about 9.30pm last nite, so we are keen to ask the dr what is it is all about and whether it has any ongoing impacts on him.
Eli is also pretty dependent on magnesium transfusions, clotting transfusions (platelets/plasma and cryoprecipitate) as well as blood now and also has to be topped up with 30ml of potassium a day. apparently it tastes gross and eli puked it all up last night.
We are happy that he is feeling a little better and not so dependent on codeine which is a relief as we really want to leave his liver alone to help it get better.
anyways...as always we will keep you posted and chat with you soon.
luv to all
the simpsons
xox
Thursday, October 23, 2008
an update for you
Hi everyone
mum here...we wont beat around the bush, eli has been gravely ill for the past few days. His liver has been failing and has been on 'supportive care' (lots of products like plasma and platelets) to help him.
No one knows what is happening or why. Based on this 'unknown', he has had to have a liver biopsy - and another scar to add to his collection. It was an extremely anxious time as eli's liver was not helping his blood clot - an open cut and a piece out of it we were told was going to be hugely risky. Thankfully he pulled through and he was put back under today to have a 'pic' line put in (a skinny version of his noodles) so the staff can take blood for testing. Poor little bugger was running out of veins very quickly because of all the tests they were doing.
Eli is not out of the woods by any means, but seems to be a bit more spirited today and awake a bit more...because he has been fasted so much for all the tests to be run, he has not really eaten anything for a very long while. I think he will have a naso-gastric tube in to start to get some nutrition back into his little body and hopefully that will help his spirits and give him some energy.
The dr's are very good at not giving away too much info. After speaking with one last night, we were advised that if eli's tests results continued to rise, he would have been put on the liver transplant list. That was obviously extremely full on information for us and probably will be for you too. There is alot for us to consume and we let you know what is happening when we can.
The character of this baby is gobsmacking. At his absolute lowest point, he still had the ability to sit up for 10minutes and eat a biscuit and cheese before sleeping again for a further 6 hours. You could play a drum kit in here at the moment and it wouldnt register with him...
for all the time we have complained he has not slept, for once we just want him to be well enough to give us a hard time and not sleep!
Currently, eli is starting to get a fair bit of fluid on board so they are taking precautions to ensure that fluid stays off his lungs.
This might be a bit full on for you all, but i guess everyone that knows us, knows that we will not hide anything. Thats just the way it is...
We have just had the drs visit who have said that they are no closer to finding out what is happening with eli.
They have confirmed that we are still not out of the woods, but some of eli's liver functions have substantially become better. He still has a very long way to go.
They have just put the naso gastric tube in, and will be starting his feeds soon.
We will do our best to keep you posted...given the current circumstances it may take a while.
We have had the most unbelievable amazing journey and it really can be the most ridiculously frustrating place. We have experienced many highs, but also some major lows. We are not just looking after our own baby, but there are many others 'babies' here going through exactly the same thing.
The time we have spent in here with eli through this round of hospitalisation has highlighted to us there are some truly amazing parents looking after their own children and honestly, i know i have drawn strength from a number of them who have recently been through what we hope to never experience, losing their angels.
Our hearts go out to the mums, dads, brothers, sisters, aunts, uncles, nana's, pas, cousins and friends of our gorgeous mates Chad and beautiful Jasmine who have succumbed to their illnesses this week. We are thinking about all of you every day and we will stay strong to preserve your beautiful spirits which have left such an impression on the way we live our own lives.
Best go, and we will keep you posted.
I will try and encourage eli to write a few words in the next couple of days providing he is feeling ok.
much love
the simpsons
xox
mum here...we wont beat around the bush, eli has been gravely ill for the past few days. His liver has been failing and has been on 'supportive care' (lots of products like plasma and platelets) to help him.
No one knows what is happening or why. Based on this 'unknown', he has had to have a liver biopsy - and another scar to add to his collection. It was an extremely anxious time as eli's liver was not helping his blood clot - an open cut and a piece out of it we were told was going to be hugely risky. Thankfully he pulled through and he was put back under today to have a 'pic' line put in (a skinny version of his noodles) so the staff can take blood for testing. Poor little bugger was running out of veins very quickly because of all the tests they were doing.
Eli is not out of the woods by any means, but seems to be a bit more spirited today and awake a bit more...because he has been fasted so much for all the tests to be run, he has not really eaten anything for a very long while. I think he will have a naso-gastric tube in to start to get some nutrition back into his little body and hopefully that will help his spirits and give him some energy.
The dr's are very good at not giving away too much info. After speaking with one last night, we were advised that if eli's tests results continued to rise, he would have been put on the liver transplant list. That was obviously extremely full on information for us and probably will be for you too. There is alot for us to consume and we let you know what is happening when we can.
The character of this baby is gobsmacking. At his absolute lowest point, he still had the ability to sit up for 10minutes and eat a biscuit and cheese before sleeping again for a further 6 hours. You could play a drum kit in here at the moment and it wouldnt register with him...
for all the time we have complained he has not slept, for once we just want him to be well enough to give us a hard time and not sleep!
Currently, eli is starting to get a fair bit of fluid on board so they are taking precautions to ensure that fluid stays off his lungs.
This might be a bit full on for you all, but i guess everyone that knows us, knows that we will not hide anything. Thats just the way it is...
We have just had the drs visit who have said that they are no closer to finding out what is happening with eli.
They have confirmed that we are still not out of the woods, but some of eli's liver functions have substantially become better. He still has a very long way to go.
They have just put the naso gastric tube in, and will be starting his feeds soon.
We will do our best to keep you posted...given the current circumstances it may take a while.
We have had the most unbelievable amazing journey and it really can be the most ridiculously frustrating place. We have experienced many highs, but also some major lows. We are not just looking after our own baby, but there are many others 'babies' here going through exactly the same thing.
The time we have spent in here with eli through this round of hospitalisation has highlighted to us there are some truly amazing parents looking after their own children and honestly, i know i have drawn strength from a number of them who have recently been through what we hope to never experience, losing their angels.
Our hearts go out to the mums, dads, brothers, sisters, aunts, uncles, nana's, pas, cousins and friends of our gorgeous mates Chad and beautiful Jasmine who have succumbed to their illnesses this week. We are thinking about all of you every day and we will stay strong to preserve your beautiful spirits which have left such an impression on the way we live our own lives.
Best go, and we will keep you posted.
I will try and encourage eli to write a few words in the next couple of days providing he is feeling ok.
much love
the simpsons
xox
Monday, October 20, 2008
Snoozy time!
Hi guys
mum here because eli is having lots and lots of snoozes at the moment.
Eli got another urinary tract infection which they discovered on sunday morning and started treatment for with antibiotics...while that was good, he got a really wicked rash which we were all a bit nervous about because of his past experience with graft vs host disease. Dr Karin (who is not ONLY a transplant guru, but also the rash guru) popped in first thing this morning and said it was probably a rash that has flared up due to one of the antibiotics he was given. It was a bit of a relief really, because by not having it, it will hopefully not make him feel so itchy. Its kind of like a huge dose of the measles but more red...
While we are confident that side of things are under control, we are pretty anxious about his liver function. We have just had the liver dr down to try and work out what is going on.
Basically it has come down to three things...drug interaction, viral infection or graft vs host disease. Very difficult when nothing is growing for them to have a 'light bulb' moment where they go...'thats whats causing it!"
The 'liver' guru of victoria is coming down later this afternoon for a chat and to check eli out. She sounds like she is hugely experienced, kinda like a dr karin of transplant!
We are getting the feeling that eli is becoming sick enough to have more hands on deck to try and work out what is going on. A couple of the function tests sees one completely off the charts, and another continually rising - obviously enough to be of major concern.
We have been told that the liver is a forgiving organ and can take a fair bit and that it will more than likely be a 'time' factor. the only real thing they can do is use 'supportive' medicine to help eli's liver work normally. Dr's have explained that there are things they can do and he is now receiving Vitaman K daily and plasma products to help eli's clotting capacity. There are are things being discussed but i think that will be a little down the track.
we are madly hoping they find a crazy virus (which is sooo weird because we havent been ANYWHERE for him to get crook!) and dearly hoping its not graft vs host disease. Its a really fine line. He has been taken off some of the medicines he was on to see if they are having a negative impact as well.
So here we are, looking forward to having some solid answers soon to help eli get better.
I dont want to sound all sooky la la, but this kid is a bloody inspiration to his dad and i. Life is pretty black and white for him and our job i suppose is just to try and keep him as comfortable as possible - which is pretty hard sometimes. We are constantly amazed at his resilience and huge heart to just keep on fighting. He is having enormous cuddles with us and we barely leave his side.
He is pretty crook at the moment and we hope he gets a break from hospital really soon. Buddah knows he needs it...i think we all do!
anyways...best cut the crap and do something...what we would do for a pretty normal life! mmm...ebay is looking good! Perhaps we can 'sell' ours and start again :-)
love and hugs to all from eli
mum
xox
mum here because eli is having lots and lots of snoozes at the moment.
Eli got another urinary tract infection which they discovered on sunday morning and started treatment for with antibiotics...while that was good, he got a really wicked rash which we were all a bit nervous about because of his past experience with graft vs host disease. Dr Karin (who is not ONLY a transplant guru, but also the rash guru) popped in first thing this morning and said it was probably a rash that has flared up due to one of the antibiotics he was given. It was a bit of a relief really, because by not having it, it will hopefully not make him feel so itchy. Its kind of like a huge dose of the measles but more red...
While we are confident that side of things are under control, we are pretty anxious about his liver function. We have just had the liver dr down to try and work out what is going on.
Basically it has come down to three things...drug interaction, viral infection or graft vs host disease. Very difficult when nothing is growing for them to have a 'light bulb' moment where they go...'thats whats causing it!"
The 'liver' guru of victoria is coming down later this afternoon for a chat and to check eli out. She sounds like she is hugely experienced, kinda like a dr karin of transplant!
We are getting the feeling that eli is becoming sick enough to have more hands on deck to try and work out what is going on. A couple of the function tests sees one completely off the charts, and another continually rising - obviously enough to be of major concern.
We have been told that the liver is a forgiving organ and can take a fair bit and that it will more than likely be a 'time' factor. the only real thing they can do is use 'supportive' medicine to help eli's liver work normally. Dr's have explained that there are things they can do and he is now receiving Vitaman K daily and plasma products to help eli's clotting capacity. There are are things being discussed but i think that will be a little down the track.
we are madly hoping they find a crazy virus (which is sooo weird because we havent been ANYWHERE for him to get crook!) and dearly hoping its not graft vs host disease. Its a really fine line. He has been taken off some of the medicines he was on to see if they are having a negative impact as well.
So here we are, looking forward to having some solid answers soon to help eli get better.
I dont want to sound all sooky la la, but this kid is a bloody inspiration to his dad and i. Life is pretty black and white for him and our job i suppose is just to try and keep him as comfortable as possible - which is pretty hard sometimes. We are constantly amazed at his resilience and huge heart to just keep on fighting. He is having enormous cuddles with us and we barely leave his side.
He is pretty crook at the moment and we hope he gets a break from hospital really soon. Buddah knows he needs it...i think we all do!
anyways...best cut the crap and do something...what we would do for a pretty normal life! mmm...ebay is looking good! Perhaps we can 'sell' ours and start again :-)
love and hugs to all from eli
mum
xox
Saturday, October 18, 2008
Ahoy there melbourne!
hi guys
eli here...mum says she is sorry for not letting me onto the computer for a while...i have been 'resting'...
unfortunately after a positive start after my grommets were put in, i started to get a bit crook again on tuesday and mum and dad thought it would be safer to head back to melbourne which is what we did on wednesday...
We got back up here on wednesday arvo and i must admit i wasnt feeling really well. Dr steve did some stuff, and we were admitted to hospital on wed nite for 'observations' coz mum reckons i was doing some really weird stuff with my eyes and i was spending lots of time holding my head. Mum said she thought it was my ears playing up again and we would be safer getting them checked out again.
Dr steve saw my eye episodes and thought it might be good to get the brain people to check me out too.
Dr 'brain' came around on thursday and said that he thought i might have been having seizures - possibly due to all the medicine i have been having...also, i had to have a big brain x-ray...something called an mri just to try and work out whether i had anything happening in my head. The dr's also ordered a big needle in my back to suck some juice out of my spine - they call that a lumber puncture to run some tests on that stuff to see if they could grow ANY bugs. To date NOTHING has grown so it has been a bit frustrating for everyone.
I had a bit of a fever for about 36 hours, but it got better yesterday lunch time. Im still REALLY REALLY sleepy and have my eyes closed up to 20 hours in 24. Im not eating huge amounts and have just started puking the stuff i have eaten all up...i caught mum off guard and got her a gooden...it was funny!
So i had the brain tests on friday morning (in between sleeps) and the results of that came back saying i wasnt having any fits/seizures which we were all relieved to hear about. I was also put to sleep on fri arvo to have the brain scan and big needle to collect juice late on friday afternoon. Early indications are that they think my brain is ok, but still cannot explain why i feel so lethargic. All my blood results are showing that there is definitely something going on, as my white cells have shot up to 27 which means there is a cootie in me somewhere. The other pretty big thing happening is that my liver is not traveling so well. The dr's have done heaps of tests that are showing that my liver is finding it pretty tough to be normal at the moment with some of the results showing that it needs to have some medicine to try and make it better.
No one really knows what is happening with me, but all i know is that im feeling pretty flat and am not doing too much except for resting and giving the staff heaps coz they are poking me HEAPS with needles (coz my noodles are out!)...ive got little holes in me EVERYWHERE! mum reckons im so brave and she tells me all the time that i am MUCH braver than what she would be. Secretly i know that mum and dad just want something to 'grow' so the dr's can get on and make me feel better. But at this point NOTHING is growing at all.
From what i can gather, there are two trains of thought...one is that it is an infection of sorts - maybe a viral infection, and the other is all the medicines im taking might be having an impact on me because i have been on them for a long time. We are hoping something shows up soon so i can feel better. I heard Dr Rachel, Dr Matthias and Dr Keith say that it really is a process of elimination. We are really not sure how long we will be here...it will really depend on how im feeling. Cant believe its been almost 5 days already! Dad reckons we should buy shares in this place!
a huge thanks to aunty jen, cousin casey and neighbour deb for visiting my mum and dad...i know mum was really happy to see them. Also, a big thanks to aunty hayley who "ALWAYS" tidys up mums things thats she starts and for looking after bodsie for us. She helps us out HEAPS with just the little things...
also, once again to all of you who constantly message and let us know that you are thinking of us...just know that we think of all of you too...more than you will probably know.
Mum is excited and sad all at the same time coz she has met another family from 'home'. She says it feels really nice to talk about 'home' as well as sharing some experiences...she feels sad too because she says no family should have to go through what we go through no matter where they are from...they are ace though.
For those that ask about the twins, from what we understand they are doing really well and last we heard they are still at home going strong.
There is another little poppet that we met who also has jmml. Her name is jessica and she was the first of all of us to be diagnosed. She is an absolute stunner and is about 17 months old now...mum said we will try and get a picture of her...it would be nice to get a photo of ALL of us who have jmml, just because it is so rare and hugely weird that we have the 4 in a million all at the same time.
anyways...i am getting really tired and dad is also looking for a bit of a lie down...dad reckons im getting really good at giving cuddles in bed!
anyhoo...love to all and keep the messages coming.
we will try and keep you posted.
luv to all
eli
xox
eli here...mum says she is sorry for not letting me onto the computer for a while...i have been 'resting'...
unfortunately after a positive start after my grommets were put in, i started to get a bit crook again on tuesday and mum and dad thought it would be safer to head back to melbourne which is what we did on wednesday...
We got back up here on wednesday arvo and i must admit i wasnt feeling really well. Dr steve did some stuff, and we were admitted to hospital on wed nite for 'observations' coz mum reckons i was doing some really weird stuff with my eyes and i was spending lots of time holding my head. Mum said she thought it was my ears playing up again and we would be safer getting them checked out again.
Dr steve saw my eye episodes and thought it might be good to get the brain people to check me out too.
Dr 'brain' came around on thursday and said that he thought i might have been having seizures - possibly due to all the medicine i have been having...also, i had to have a big brain x-ray...something called an mri just to try and work out whether i had anything happening in my head. The dr's also ordered a big needle in my back to suck some juice out of my spine - they call that a lumber puncture to run some tests on that stuff to see if they could grow ANY bugs. To date NOTHING has grown so it has been a bit frustrating for everyone.
I had a bit of a fever for about 36 hours, but it got better yesterday lunch time. Im still REALLY REALLY sleepy and have my eyes closed up to 20 hours in 24. Im not eating huge amounts and have just started puking the stuff i have eaten all up...i caught mum off guard and got her a gooden...it was funny!
So i had the brain tests on friday morning (in between sleeps) and the results of that came back saying i wasnt having any fits/seizures which we were all relieved to hear about. I was also put to sleep on fri arvo to have the brain scan and big needle to collect juice late on friday afternoon. Early indications are that they think my brain is ok, but still cannot explain why i feel so lethargic. All my blood results are showing that there is definitely something going on, as my white cells have shot up to 27 which means there is a cootie in me somewhere. The other pretty big thing happening is that my liver is not traveling so well. The dr's have done heaps of tests that are showing that my liver is finding it pretty tough to be normal at the moment with some of the results showing that it needs to have some medicine to try and make it better.
No one really knows what is happening with me, but all i know is that im feeling pretty flat and am not doing too much except for resting and giving the staff heaps coz they are poking me HEAPS with needles (coz my noodles are out!)...ive got little holes in me EVERYWHERE! mum reckons im so brave and she tells me all the time that i am MUCH braver than what she would be. Secretly i know that mum and dad just want something to 'grow' so the dr's can get on and make me feel better. But at this point NOTHING is growing at all.
From what i can gather, there are two trains of thought...one is that it is an infection of sorts - maybe a viral infection, and the other is all the medicines im taking might be having an impact on me because i have been on them for a long time. We are hoping something shows up soon so i can feel better. I heard Dr Rachel, Dr Matthias and Dr Keith say that it really is a process of elimination. We are really not sure how long we will be here...it will really depend on how im feeling. Cant believe its been almost 5 days already! Dad reckons we should buy shares in this place!
a huge thanks to aunty jen, cousin casey and neighbour deb for visiting my mum and dad...i know mum was really happy to see them. Also, a big thanks to aunty hayley who "ALWAYS" tidys up mums things thats she starts and for looking after bodsie for us. She helps us out HEAPS with just the little things...
also, once again to all of you who constantly message and let us know that you are thinking of us...just know that we think of all of you too...more than you will probably know.
Mum is excited and sad all at the same time coz she has met another family from 'home'. She says it feels really nice to talk about 'home' as well as sharing some experiences...she feels sad too because she says no family should have to go through what we go through no matter where they are from...they are ace though.
For those that ask about the twins, from what we understand they are doing really well and last we heard they are still at home going strong.
There is another little poppet that we met who also has jmml. Her name is jessica and she was the first of all of us to be diagnosed. She is an absolute stunner and is about 17 months old now...mum said we will try and get a picture of her...it would be nice to get a photo of ALL of us who have jmml, just because it is so rare and hugely weird that we have the 4 in a million all at the same time.
anyways...i am getting really tired and dad is also looking for a bit of a lie down...dad reckons im getting really good at giving cuddles in bed!
anyhoo...love to all and keep the messages coming.
we will try and keep you posted.
luv to all
eli
xox
Tuesday, October 14, 2008
homeward bound again!
Hi everyone...
eli here...after nearly a week back in melbourne, we are home again. I slept terrible and ended up in with mum and dad for big homecoming cuddles...somehow i think they are not going to be as forgiving tonight! I made the most of it anyways!
all is well...we had a pretty rough night last night so im a bit grumpy today. Mum and i did a little bit of 'stuff' this morning in town...bills to pay and letters to send, so we were quite busy. I was pretty happy to tag along and see the new sights of lakes entrance. We are still really careful not to go in majorly busy places to keep me protected!
my ears are heaps better, but the antibiotics are giving my tummy a work out (if you know what i mean!). Hopefully we will be off everything by friday and my tummy (and moods) will get a bit better!
mum reckons all the medicines this morning added up to about 16ml...a huge amount for a teeny tiny little tummy. No wonder i dont feel like eating!
Dr steve said my liver tests have come back a bit yuk, but i have to have another blood test on thursday and have the results sent through to melbourne. We are pretty positive and dr steve said its most likely caused by a drug interaction (fancy words for too many medicines not playing nicely with one another!)
we are heading back to melb next monday for another appointment, but for now, we are just keen to hang out as a family at HOME!
We also got a ripper letter from Challenge to say thanks for all the books that a few of you donated to them for their library...
the letter says:
"For many years now, Challenge has provided many forms of entertainment in both the Royal Childrens Hospital and Monash Medical Centre. On a daily basis staff distribute DVD's, Playstation and X Box consoles, Laptops with Internet access and recently have purchased a Nintendo Wii, all with the aim of entertaining the children staying in the ward and reducing the inevitable boredom.
we identified earlier in the year that a resource lacking within the wards were books. Kids of all ages love to read, and not everyone loves playing computer games to fill in their time.
Thankyou for answering the call and helping Challenge to put together an impressive library of books catering for all ages and interests. We now have over 600 top quality books at the office.
Once we have catalogued and labelled all of these books, the children within both hospitals will certainly have their hands full choosing which book they want to read first!
Once again, thankyou for your generous donation, we greatly appreciate your support.
Kind regards
David Rogers - Chief Executive Officer
Challenge - supporting kids with cancer.
So a huge THANKS to all of you once again for helping challenge...they like many organisations do an awesome job helping kids like me...big AND little!
The other thing that is ALWAYS needed are bandaids (and ive used my fair share of them this past week now that my noodles are gone!)...so if you think about it at your next shopping trip, please buy a box and get them to mum, or if you are in melbourne, call into the 6th ward and drop them off...i know kids like me will appreciate them...i actually scored krusty the clown on one arm and homer on the other! They are gorgeous!
Anyhoo, best fly...feeling a bit tired...gotta try and sneek a sleep in!
luv to everyone
eli
xox
eli here...after nearly a week back in melbourne, we are home again. I slept terrible and ended up in with mum and dad for big homecoming cuddles...somehow i think they are not going to be as forgiving tonight! I made the most of it anyways!
all is well...we had a pretty rough night last night so im a bit grumpy today. Mum and i did a little bit of 'stuff' this morning in town...bills to pay and letters to send, so we were quite busy. I was pretty happy to tag along and see the new sights of lakes entrance. We are still really careful not to go in majorly busy places to keep me protected!
my ears are heaps better, but the antibiotics are giving my tummy a work out (if you know what i mean!). Hopefully we will be off everything by friday and my tummy (and moods) will get a bit better!
mum reckons all the medicines this morning added up to about 16ml...a huge amount for a teeny tiny little tummy. No wonder i dont feel like eating!
Dr steve said my liver tests have come back a bit yuk, but i have to have another blood test on thursday and have the results sent through to melbourne. We are pretty positive and dr steve said its most likely caused by a drug interaction (fancy words for too many medicines not playing nicely with one another!)
we are heading back to melb next monday for another appointment, but for now, we are just keen to hang out as a family at HOME!
We also got a ripper letter from Challenge to say thanks for all the books that a few of you donated to them for their library...
the letter says:
"For many years now, Challenge has provided many forms of entertainment in both the Royal Childrens Hospital and Monash Medical Centre. On a daily basis staff distribute DVD's, Playstation and X Box consoles, Laptops with Internet access and recently have purchased a Nintendo Wii, all with the aim of entertaining the children staying in the ward and reducing the inevitable boredom.
we identified earlier in the year that a resource lacking within the wards were books. Kids of all ages love to read, and not everyone loves playing computer games to fill in their time.
Thankyou for answering the call and helping Challenge to put together an impressive library of books catering for all ages and interests. We now have over 600 top quality books at the office.
Once we have catalogued and labelled all of these books, the children within both hospitals will certainly have their hands full choosing which book they want to read first!
Once again, thankyou for your generous donation, we greatly appreciate your support.
Kind regards
David Rogers - Chief Executive Officer
Challenge - supporting kids with cancer.
So a huge THANKS to all of you once again for helping challenge...they like many organisations do an awesome job helping kids like me...big AND little!
The other thing that is ALWAYS needed are bandaids (and ive used my fair share of them this past week now that my noodles are gone!)...so if you think about it at your next shopping trip, please buy a box and get them to mum, or if you are in melbourne, call into the 6th ward and drop them off...i know kids like me will appreciate them...i actually scored krusty the clown on one arm and homer on the other! They are gorgeous!
Anyhoo, best fly...feeling a bit tired...gotta try and sneek a sleep in!
luv to everyone
eli
xox
Saturday, October 11, 2008
Ahhh...the big city lights call for us again!
Hi everyone
mum here...so sorry its taken a while to get back to all of you, but like you know...there is NEVER a dull moment in the Simpson house!
after we returned on monday from our Dr appt, things were looking ok, although eli was still a bit 'off'...
tuesday morning came and eli woke from his morning sleep with a pretty high temperature (NOOOOO)...so it was off to lakes to see what they thought...they werent mucking around and teed up a trip straight to melbourne...
eli's temp hovered around 38.9 and we figured we should probably call melb.
Anyhoo, the ambo's took us to bairnsdale where we waited to catch an air ambulance to melbourne...after his first needle of anti's his temp came down, but he was still pretty irritable and very tired all the time.
we got to melbourne about 10.30pm that night and finally got to bed around 1.45am after spending a short time in emergency. They whacked a 'bung' in, gave some more antibiotics then we waited until the next day...
the dr's came in and were a bit puzzled about what had gone on. all we knew was that eli wasnt feeling himself and hadnt been for a couple of weeks, but they couldnt see anything wrong and thought it may have been a virus.
We stayed in supportive care (emergency accom situated at the hospital) and had a terrible night with eli...he didnt sleep at all and he was terribly grumpy and gave his lungs a good work out...
we filled him with panadol but it didnt do much good...weird..
anyhoo...eli woke up from his arvo sleep on thursday and screamed non-stop for about 2 hours. Pete took him back to the ward and luckily dr karin came in to see him. She picked up almost immediately that something was going on with his head. She said it was like he was dizzy and she noticed he kept tugging at his ears. Pete said that we had had them checked every time we came up coz we noticed the same thing. We were told they could see nothing and we thought it might have been teeth coming through.
Anyhoo....dr karin arranged the eye people and the ears/nose/throat people to have a squizz. She also added an anitbiotic which seemed to work pretty quickly. It was lucky she was there to see his 'meltdown'...
the eye people were looking for pressure behind his eyes, and the ear/nose/throat people were looking for signs of infection. The Dr saw what looked like a bit of fluid in his right ear and thought it might have been the cause of his grief. She left us, came back, had another look and said that she had booked eli in for his ears to be looked at in theatre and suspected he had an infection...in immuno-suppressed kids, they cant make 'pus' which is obviously something they look for!
so off we went to theatre late last arvo and they confirmed he had lots of fluid behind his drums and put grommets in each ear to help drain...
INSTANT relief for eli and mum and dad! Eli is a very happy, curious, playful and gorgeous little soul again.
Like Dr Karin said, we still have to keep an eye on the 'baby' stuff as well as the leukaemia stuff. When he gets temps, we worry about the 'big stuff'...while we kept saying he was tugging on his ears heaps, we honestly thought it was teeth and that there was something else 'brewing'...
when its all said and done, he has 2 new ears and boy is he happy for it...he is back to being awake and active more through the day and is sleeping like a kitten at night. YAYAYAYAYAYAY....
Eli is still on anti's through an IV (because the took his hickman out last wed - DOH!)...but he will hopefully swap to oral anti's early next week. FIngers crossed we SHOULD be home again early next week if it all turns out ok.
Oh...and funny enough he has started eating heaps again - thank GOODNESS!
best go and start the night stuff and hopefully get him to bed a little earlier than what he has been!
luv to all
the simpsons
xox
mum here...so sorry its taken a while to get back to all of you, but like you know...there is NEVER a dull moment in the Simpson house!
after we returned on monday from our Dr appt, things were looking ok, although eli was still a bit 'off'...
tuesday morning came and eli woke from his morning sleep with a pretty high temperature (NOOOOO)...so it was off to lakes to see what they thought...they werent mucking around and teed up a trip straight to melbourne...
eli's temp hovered around 38.9 and we figured we should probably call melb.
Anyhoo, the ambo's took us to bairnsdale where we waited to catch an air ambulance to melbourne...after his first needle of anti's his temp came down, but he was still pretty irritable and very tired all the time.
we got to melbourne about 10.30pm that night and finally got to bed around 1.45am after spending a short time in emergency. They whacked a 'bung' in, gave some more antibiotics then we waited until the next day...
the dr's came in and were a bit puzzled about what had gone on. all we knew was that eli wasnt feeling himself and hadnt been for a couple of weeks, but they couldnt see anything wrong and thought it may have been a virus.
We stayed in supportive care (emergency accom situated at the hospital) and had a terrible night with eli...he didnt sleep at all and he was terribly grumpy and gave his lungs a good work out...
we filled him with panadol but it didnt do much good...weird..
anyhoo...eli woke up from his arvo sleep on thursday and screamed non-stop for about 2 hours. Pete took him back to the ward and luckily dr karin came in to see him. She picked up almost immediately that something was going on with his head. She said it was like he was dizzy and she noticed he kept tugging at his ears. Pete said that we had had them checked every time we came up coz we noticed the same thing. We were told they could see nothing and we thought it might have been teeth coming through.
Anyhoo....dr karin arranged the eye people and the ears/nose/throat people to have a squizz. She also added an anitbiotic which seemed to work pretty quickly. It was lucky she was there to see his 'meltdown'...
the eye people were looking for pressure behind his eyes, and the ear/nose/throat people were looking for signs of infection. The Dr saw what looked like a bit of fluid in his right ear and thought it might have been the cause of his grief. She left us, came back, had another look and said that she had booked eli in for his ears to be looked at in theatre and suspected he had an infection...in immuno-suppressed kids, they cant make 'pus' which is obviously something they look for!
so off we went to theatre late last arvo and they confirmed he had lots of fluid behind his drums and put grommets in each ear to help drain...
INSTANT relief for eli and mum and dad! Eli is a very happy, curious, playful and gorgeous little soul again.
Like Dr Karin said, we still have to keep an eye on the 'baby' stuff as well as the leukaemia stuff. When he gets temps, we worry about the 'big stuff'...while we kept saying he was tugging on his ears heaps, we honestly thought it was teeth and that there was something else 'brewing'...
when its all said and done, he has 2 new ears and boy is he happy for it...he is back to being awake and active more through the day and is sleeping like a kitten at night. YAYAYAYAYAYAY....
Eli is still on anti's through an IV (because the took his hickman out last wed - DOH!)...but he will hopefully swap to oral anti's early next week. FIngers crossed we SHOULD be home again early next week if it all turns out ok.
Oh...and funny enough he has started eating heaps again - thank GOODNESS!
best go and start the night stuff and hopefully get him to bed a little earlier than what he has been!
luv to all
the simpsons
xox
Monday, October 6, 2008
Dr says....
Hi guys
thanks will, chad and nick for writing on my blog...u guys rock! I hope you all get out of hospital really soon...we think about you heaps...
looks like everything is in working order, although im still pretty grouchy (and hands-on)...mum had a good chat with dr steve who said that all the bloods and stuff have come back really good...my platelets are like...200 or something! How awesome is that...
we had an angel flight again today...geez those guys do an awesome job..we left at 8.30am and were back at home by 4.30pm (thanks to donna who picked us up from bairnsdale coz the weather was a bit yukky!)...so yukky that i puked a couple of times!
so thanks a MILLION to angelflight...we just cant believe the generosity of these people...to help families like ours. It feels so nice to be in my own bed again thats for sure!
Nurse Aimee rang tonite and said that one of my anti-rejection drugs was a bit high (the one that gives me my wicked eyebrows!) so to start lowering it. Its pretty exciting but nerve-racking in a way because it means that all the drugs are slowly being weaned, which is really cool, but i know mum gets nervous coz i can still pick up stuff...
its a catch22 as mum would say!
the only other goss is that some of my other drugs are also being reduced too. I have been off my grub for a bit and ended up losing about 700g in a week! pretty big, but i briefly saw DR Karin who said that i was looking really good and had lost all of my weight. She didnt seem to worried, she reckons i had a fair bit to lose!
We have just had the best weekend ever! dad and me have done soooo much stuff! i helped him around the house, he has walked me heaps to give mum a bit of a rest...we all went out to the farm and visited the cows (that was so way cool, although because it is so dry down here at the moment, mum and dad have to sell a few - including tom piper!)...but they reckon we will hold onto moowhistle and stevo for a bit longer and we are hoping that moowhistle will get pregnant again soon...but stevo is getting toooooo big so mum and dad said that he has to get the 'snip' soon - dunno what that means :-) then we will fatten him up and get rid of him too...dad reckons we should invest in some shares (he says that with a giggle!)
i also got to the beach for the very first time...it was glorious, although i was quite taken by the fact that i could rub cheese into mums hair!
ahhh...the simple things in life are often the best!
anyhooo...best fly, its almost feeding time at the zoo and mum is nagging me to put the nappy in the bin. (she appears oblivious to the fact that i am completely immobile unless i am on her hip!)
luv to all
eli
xox
mum says that she will put some piccies up really soon...we have been FLAT out like blue-bum flies!
thanks will, chad and nick for writing on my blog...u guys rock! I hope you all get out of hospital really soon...we think about you heaps...
looks like everything is in working order, although im still pretty grouchy (and hands-on)...mum had a good chat with dr steve who said that all the bloods and stuff have come back really good...my platelets are like...200 or something! How awesome is that...
we had an angel flight again today...geez those guys do an awesome job..we left at 8.30am and were back at home by 4.30pm (thanks to donna who picked us up from bairnsdale coz the weather was a bit yukky!)...so yukky that i puked a couple of times!
so thanks a MILLION to angelflight...we just cant believe the generosity of these people...to help families like ours. It feels so nice to be in my own bed again thats for sure!
Nurse Aimee rang tonite and said that one of my anti-rejection drugs was a bit high (the one that gives me my wicked eyebrows!) so to start lowering it. Its pretty exciting but nerve-racking in a way because it means that all the drugs are slowly being weaned, which is really cool, but i know mum gets nervous coz i can still pick up stuff...
its a catch22 as mum would say!
the only other goss is that some of my other drugs are also being reduced too. I have been off my grub for a bit and ended up losing about 700g in a week! pretty big, but i briefly saw DR Karin who said that i was looking really good and had lost all of my weight. She didnt seem to worried, she reckons i had a fair bit to lose!
We have just had the best weekend ever! dad and me have done soooo much stuff! i helped him around the house, he has walked me heaps to give mum a bit of a rest...we all went out to the farm and visited the cows (that was so way cool, although because it is so dry down here at the moment, mum and dad have to sell a few - including tom piper!)...but they reckon we will hold onto moowhistle and stevo for a bit longer and we are hoping that moowhistle will get pregnant again soon...but stevo is getting toooooo big so mum and dad said that he has to get the 'snip' soon - dunno what that means :-) then we will fatten him up and get rid of him too...dad reckons we should invest in some shares (he says that with a giggle!)
i also got to the beach for the very first time...it was glorious, although i was quite taken by the fact that i could rub cheese into mums hair!
ahhh...the simple things in life are often the best!
anyhooo...best fly, its almost feeding time at the zoo and mum is nagging me to put the nappy in the bin. (she appears oblivious to the fact that i am completely immobile unless i am on her hip!)
luv to all
eli
xox
mum says that she will put some piccies up really soon...we have been FLAT out like blue-bum flies!
Friday, October 3, 2008
GOING...GOING....GONE!
HI there
eli here....
all is well in the world of the simpsons...i ended up having my noodles out on wednesday arvo...bit of a drama, but they are out and it is an AWESOME feeling not having it in anymore...mum held me tight, and i was very brave (and doped up on stuff that made me feel very woooozy!)...a couple of big yanks and out it came. After nearly 7 months of having it in, it seemed impossible that it would ever come out! But it has and we are all celebrating!
BUT thats not the ONLY thing we are celebrating...i am writing this from our HOME in lakes...we finally made it HOME HOME and BOY does it feel fantastic...
after a 6 hour trip (i had to have a pit stop of course) we finally made it home to lakes. mum said she cried like a baby and dad was keen to set up our fairy lights on the balcony...its just the little things i guess.
as mum says, our home looks like a bombs hit it...but we will get there...8 months of being away from home and accumulating HEAPS of stuff, will do it to you!
anyways...just wanted to let everyone know that our dream has come true and at this stage we are all safe and sound! We will have to travel to melbourne every monday at this stage for our 'bloods' and check up from dr steve...
thanks so much to the leukaemia foundation for having us so long in their north melbourne flat which we called home for 5 months. Their constant support has been absolutely fantastic and allowed us to be a family in our own space...thank you SOOOOO much.
thanks also so all our friends and family who have been with us and will continue to be for the next few months...u guys are totally special and we cannot thank you enough.
Thanks also to the special staff at the hospital for getting us to a point where we can go home...awesome.
thanks too to aunty hayley for helping mum and dad by 'spring' cleaning our house before we came home...it was a huge relief to not worry about cleaning (we have to pack all our stuff away now - yikes!
welcome to my new cousin "clare elizabeth' who was born on 30th september...i look forward to meeting her one day soon.
also big kisses to my pa in sale...it was so great to see him after soooo very long...
lastly, thanks to nana in bacchus marsh who helped us move our stuff and clean the house in north melbourne...she did a great job helping us.
betta fly
lots of love
eli
xox
eli here....
all is well in the world of the simpsons...i ended up having my noodles out on wednesday arvo...bit of a drama, but they are out and it is an AWESOME feeling not having it in anymore...mum held me tight, and i was very brave (and doped up on stuff that made me feel very woooozy!)...a couple of big yanks and out it came. After nearly 7 months of having it in, it seemed impossible that it would ever come out! But it has and we are all celebrating!
BUT thats not the ONLY thing we are celebrating...i am writing this from our HOME in lakes...we finally made it HOME HOME and BOY does it feel fantastic...
after a 6 hour trip (i had to have a pit stop of course) we finally made it home to lakes. mum said she cried like a baby and dad was keen to set up our fairy lights on the balcony...its just the little things i guess.
as mum says, our home looks like a bombs hit it...but we will get there...8 months of being away from home and accumulating HEAPS of stuff, will do it to you!
anyways...just wanted to let everyone know that our dream has come true and at this stage we are all safe and sound! We will have to travel to melbourne every monday at this stage for our 'bloods' and check up from dr steve...
thanks so much to the leukaemia foundation for having us so long in their north melbourne flat which we called home for 5 months. Their constant support has been absolutely fantastic and allowed us to be a family in our own space...thank you SOOOOO much.
thanks also so all our friends and family who have been with us and will continue to be for the next few months...u guys are totally special and we cannot thank you enough.
Thanks also to the special staff at the hospital for getting us to a point where we can go home...awesome.
thanks too to aunty hayley for helping mum and dad by 'spring' cleaning our house before we came home...it was a huge relief to not worry about cleaning (we have to pack all our stuff away now - yikes!
welcome to my new cousin "clare elizabeth' who was born on 30th september...i look forward to meeting her one day soon.
also big kisses to my pa in sale...it was so great to see him after soooo very long...
lastly, thanks to nana in bacchus marsh who helped us move our stuff and clean the house in north melbourne...she did a great job helping us.
betta fly
lots of love
eli
xox
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