El had a tune-up in the middle of October, even though she only cultured staph. She had trouble getting a picc line, so had a central line in her neck, which actually was less traumatic for getting hooked up to her IV. We came home for the second week of treatment which was great! Removal of the central line was horrible (so many stitches).
Since the admission her cough has cleared up and she has put on lots of weight!! Her meds and physio have also changed. So I'll put a list below.
1 abdek capsule/day
3mls iron/day
creon 10000 1/6g fat
6 puffs ventolin
4mls 4% hypertonic saline (nebulised)
The ventolin and hypertonic are done before her physio, which is mainly PEP and jumping on the trampoline. At the moment because she is so well we are only doing physio once a day.
Friday, December 9, 2011
Tuesday, December 6, 2011
Homeschooling
We are officially on Christmas Holidays!! J has been enrolled for 6 months now, and yesterday finished his last PACE for the year! Next year J and Em will both be enrolled, so I have to fill out some paperwork, pay some money and order next terms school books, and we will be all organised for next year.
As far as the holidays go we have no big plans just little ones. I also want to get cupboards etc. cleaned out before we start school again next year, and also look after this neglected blog a little better, but for now I am happy to be looking at the start of a few weeks with no schoolwork!
As far as the holidays go we have no big plans just little ones. I also want to get cupboards etc. cleaned out before we start school again next year, and also look after this neglected blog a little better, but for now I am happy to be looking at the start of a few weeks with no schoolwork!
Wednesday, June 29, 2011
Cleft Stuff
Compared to the first couple of years with miss Em, this is a relatively quiet time. The first two years in particular were filled with appointments: plastic surgery, ENT, hearing tests, speech, etc... This year we have been to one speech appointment, one dentist appointment and one with her orthodontist. Not bad for half way through the year!! We should have seen the plastic surgeon last year, but he is on long service leave, so it could be a while before we see him.
In some rather exciting news Miss Em has her first wiggly tooth! So we now have a competition on our hands to see who will lose their tooth first, J (who has his 7th or 8th wiggly tooth, I am not sure which he has lost quite a few) or Em! My money is on Em as she wiggles her's constantly, and J doesn't wiggle his and it has been wiggly for about 6 months already!
In some rather exciting news Miss Em has her first wiggly tooth! So we now have a competition on our hands to see who will lose their tooth first, J (who has his 7th or 8th wiggly tooth, I am not sure which he has lost quite a few) or Em! My money is on Em as she wiggles her's constantly, and J doesn't wiggle his and it has been wiggly for about 6 months already!
Monday, June 27, 2011
Neglected!
Since I have been busy with the 31 days of May the CF way - which kept me busy through most of June too! I have missed two important times on my blog! The first being its first birthday! So happy first birthday blog! Time certainly flies, Its hard to believe I have been writing on here for a whole year.
The other important thing was 100 posts! I find it hard to believe that I have that much to say. Here's to another year and another 100 posts!
The other important thing was 100 posts! I find it hard to believe that I have that much to say. Here's to another year and another 100 posts!
Friday, June 24, 2011
31 Days of May the CF Way - Day 31 Thank you
Thanks to everyone who has been reading these posts for 1 whole month (well actually 2- cause its taken me that long!!!)
I hope that your understanding of CF has increased.
Thanks to the other CF Mum's who started this off in the first place.
All my love
I hope that your understanding of CF has increased.
Thanks to the other CF Mum's who started this off in the first place.
All my love
Thursday, June 23, 2011
31 Days of May the CF Way - Day 30
In 1989 scientists discovered the CF gene on chromosome #7. This was a huge milestone in the fight to find a cure. WHat are YOU going to do to raise awareness for CF? With your help we could make CF stand for Cure Found.
I am organising a tupperware party for next month, 10% of all sales will be donated to Cystic Fibrosis Queensland.
We are also going to be doing the Great Strides Walkathon on the 16th of October. Last year Team El raised over $600. Keep the day free and join in the walk.
I am organising a tupperware party for next month, 10% of all sales will be donated to Cystic Fibrosis Queensland.
We are also going to be doing the Great Strides Walkathon on the 16th of October. Last year Team El raised over $600. Keep the day free and join in the walk.
Sunday, June 19, 2011
31 Days of May the CF Way - Day 29 In Q and A part 2
1.Do the different types (Gene types) of CF affect the individuals in different ways or are they basically the same?
To start with you have to have two of the faulty genes to have CF. These can be the same faulty gene or a combination of two different faulty genes. My understanding is that depending on the type of gene they can pretty much guarantee if the digestive system will be involved or not. With some gene types, there is not need for digestive enzymes to be taken.
However, I think that all people with CF, have lung issues, and this tends to be very individual, not determined by the genes involved. I'm not sure if I've explained that very well? Let me know if it doesn't make sense, and I'll try explaining again!
2.
One of my Mum's work colleagues had CF, then had a lung transplant, and she said it completely opened up his life - he started running marathons and the like. I know that CF lungs are really mucousy, which is why you have to do so much physio - but aren't there digestive issues as well, hence the enzymes? So someone who had CF then had a lung transplant would have to take anti-rejection drugs for the rest of their life, but would still have to monitor diet and have enzymes, is that right?
From my understanding that is correct! I believe that their energy requirements are less. I also read recently that other symptoms like finger clubbing disappear, too.
3. How do you feel about transplants? (I don't ask that flippantly, I know it's a really big issue to some people).
I have mixed feeling about transplant. I am quite happy to donate my organs after I die. But if i had to decide for El to accept a transplant I'm not sure I would, but I think Rob would! How's that for a dilemma? I hope that she will be old enough to make a decision for herself when the time comes, and pray that i will be able to support her in that decision.
4. I appreciate that you're trying to make your family as normal as possible - what can we do to support you?
Prayers help, and keeping the older kids for appointments also helps and just listening when I babble!
I hope that answers everybody's questions ok!
To start with you have to have two of the faulty genes to have CF. These can be the same faulty gene or a combination of two different faulty genes. My understanding is that depending on the type of gene they can pretty much guarantee if the digestive system will be involved or not. With some gene types, there is not need for digestive enzymes to be taken.
However, I think that all people with CF, have lung issues, and this tends to be very individual, not determined by the genes involved. I'm not sure if I've explained that very well? Let me know if it doesn't make sense, and I'll try explaining again!
2.
One of my Mum's work colleagues had CF, then had a lung transplant, and she said it completely opened up his life - he started running marathons and the like. I know that CF lungs are really mucousy, which is why you have to do so much physio - but aren't there digestive issues as well, hence the enzymes? So someone who had CF then had a lung transplant would have to take anti-rejection drugs for the rest of their life, but would still have to monitor diet and have enzymes, is that right?
From my understanding that is correct! I believe that their energy requirements are less. I also read recently that other symptoms like finger clubbing disappear, too.
3. How do you feel about transplants? (I don't ask that flippantly, I know it's a really big issue to some people).
I have mixed feeling about transplant. I am quite happy to donate my organs after I die. But if i had to decide for El to accept a transplant I'm not sure I would, but I think Rob would! How's that for a dilemma? I hope that she will be old enough to make a decision for herself when the time comes, and pray that i will be able to support her in that decision.
4. I appreciate that you're trying to make your family as normal as possible - what can we do to support you?
Prayers help, and keeping the older kids for appointments also helps and just listening when I babble!
I hope that answers everybody's questions ok!
Saturday, June 18, 2011
31 Days of May the CF Way - Day 28 In Q and A part 1
1.What is the course of life for a typical CF person, if there be such a thing?
The sticky mucus in cf lungs is a breeding ground for bacteria, which causes infection, which causes irreversible scarring. The scarring becomes worse and worse and eventually the lungs don't work well enough to support life. So, I guess there is a gradual decrease in lung function. How quickly this happens varies from person to person, even with siblings.
2.You mentioned that there's a particularly nasty bacteria that usually makes an appearance, and current life expectancy is somewhere around 30 - are there any/many restrictions within their lives (eg can't work the lungs too hard with intense sport), apart from carefully monitoring their diet/enzymes, taking loads of pills, and more frequent hospital admissions?
The particularly nasty bacteria is pseudomonas. Which seems to damage the lungs quite significantly. I don't believe that there are many restrictions, until their lungs function becomes lower and they require oxygen.
3.Are certain sports recommended for children with CF?
Recently I was speaking with a nurse who had been working with children with CF for twenty years what the biggest difference is now to when she started. She said the drugs that were being/had been developed, but also the exercise that was being encouraged now that hadn't been in the past. We have been specifically encourage to get El swimming (which we did over summer) and jumping on the trampoline (we have a mini tramp), but anything that gets their heart pumping and their lungs working to move that sticy gunk is fantastic.
4.What is the average life expectancy for someone with CF?
Life expectancy in Australia for people with CF is now 35 years. I'm not really sure if this is an average figure or not, but I believe the average is around mid 30's.
Well, that's it for this post. If you have any more questions or I haven't answered these questions well enough, let me know so that I can put it in my next post.
The sticky mucus in cf lungs is a breeding ground for bacteria, which causes infection, which causes irreversible scarring. The scarring becomes worse and worse and eventually the lungs don't work well enough to support life. So, I guess there is a gradual decrease in lung function. How quickly this happens varies from person to person, even with siblings.
2.You mentioned that there's a particularly nasty bacteria that usually makes an appearance, and current life expectancy is somewhere around 30 - are there any/many restrictions within their lives (eg can't work the lungs too hard with intense sport), apart from carefully monitoring their diet/enzymes, taking loads of pills, and more frequent hospital admissions?
The particularly nasty bacteria is pseudomonas. Which seems to damage the lungs quite significantly. I don't believe that there are many restrictions, until their lungs function becomes lower and they require oxygen.
3.Are certain sports recommended for children with CF?
Recently I was speaking with a nurse who had been working with children with CF for twenty years what the biggest difference is now to when she started. She said the drugs that were being/had been developed, but also the exercise that was being encouraged now that hadn't been in the past. We have been specifically encourage to get El swimming (which we did over summer) and jumping on the trampoline (we have a mini tramp), but anything that gets their heart pumping and their lungs working to move that sticy gunk is fantastic.
4.What is the average life expectancy for someone with CF?
Life expectancy in Australia for people with CF is now 35 years. I'm not really sure if this is an average figure or not, but I believe the average is around mid 30's.
Well, that's it for this post. If you have any more questions or I haven't answered these questions well enough, let me know so that I can put it in my next post.
Friday, June 17, 2011
31 Days of May the CF Way - Day 27 In Memory
In Memory of
Conner Reed Jones April 14, 2003 to June 24, 2010.
Jessica Wales Jessica died on 12 January, 2010, aged 20.
Eva Markvoort March 31, 1984 – March 27, 2010.
Alicai R 12/12/2000 - 17/5/2011
“One person every day still dies from cystic fibrosis."
Margarete Cassalina of Milton, N.Y.,
Conner Reed Jones April 14, 2003 to June 24, 2010.
Jessica Wales Jessica died on 12 January, 2010, aged 20.
Eva Markvoort March 31, 1984 – March 27, 2010.
Alicai R 12/12/2000 - 17/5/2011
“One person every day still dies from cystic fibrosis."
Margarete Cassalina of Milton, N.Y.,
Thursday, June 9, 2011
31 Days of May the CF Way - Day 26 A Legacy Like No Other
It was amazing that yesterday when I was reading the topic for this post I couldn't decide which amazing CF warrior to write this post about and then I read a blog which I have been following for quite a while and what she wrote truly fit into the topic. This mother lost her young boy to CF almost a year ago. If you would like to read the whole post it is at http://notsobrightandshiny.blogspot.com/
But this is the part that is most relevant.
"I truly, cannot believe it’s been a year. I dream of him often, he still leaves lots of red out for us in the most unexpected places, and sends remarkable people into our lives almost daily. it amazes me how much his story has impacted others, and how far across the world his LOVE has reached. I love to google his name and see it mentioned on many pages. it’s really what life’s all about. leaving a legacy."
Conner Reed Jones April 14, 2003- June 24, 2010.
If you want to read about other amazing people with CF look up the following: Eva Markvoort,and Burke P. Bear ( I would like to get one of these for El when she is older).
Please get Questions in, if you have them as its day 29 for questions.
But this is the part that is most relevant.
"I truly, cannot believe it’s been a year. I dream of him often, he still leaves lots of red out for us in the most unexpected places, and sends remarkable people into our lives almost daily. it amazes me how much his story has impacted others, and how far across the world his LOVE has reached. I love to google his name and see it mentioned on many pages. it’s really what life’s all about. leaving a legacy."
Conner Reed Jones April 14, 2003- June 24, 2010.
If you want to read about other amazing people with CF look up the following: Eva Markvoort,and Burke P. Bear ( I would like to get one of these for El when she is older).
Please get Questions in, if you have them as its day 29 for questions.
Friday, June 3, 2011
31 Days of May the CF Way - Day 25 My Biggest Fear
I think my biggest fear in regards to CF, is having to watch my child suffer. Not just the numerous needles and medicines, but potentially watching her lungs fail her, watching her struggle to breathe. I hope it never comes to that, but the odds are not very good. It is something I try not to think about. But when I do it makes me feel ill. That is my biggest fear.
Sorry for the depressing post, but that is the truth. Please don't forget to send me any questions for my day 30 post.
Sorry for the depressing post, but that is the truth. Please don't forget to send me any questions for my day 30 post.
31 Days of May the CF Way - Day 24 My Saviour
I know its June, but I had an inspection and had to spend my spare time cleaning! So I am starting to catch up.
Jesus is my saviour! A really short one, easy to write. I thought I'd include a Bible verse that has been my favourite for a while.
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
Jesus is my saviour! A really short one, easy to write. I thought I'd include a Bible verse that has been my favourite for a while.
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
Sunday, May 29, 2011
31 Days of May the CF Way - Day 23 Hygiene
Hygiene is quite important, all the time for any of us, but I am a little more careful since we have someone with CF in our home. We try to limit El's exposure to the bugs that could cause damage to her lungs. Which is quite difficult as they live everywhere!
We do not visit or have playdates with anyone who has a cold (or whose family member has a cold), or let them visit us!
If anyone in our house has a cold they stay away from B, quite difficult really (Especially when its me!). Tissues are meant to be thrown away and hands washed after coughing and sneezing. All really basic hygiene, just more emphasis on it in our home!
When we are out, I always carry hand sanitizer which we use before eating/drinking and when leaving places (like the library or shops).
When we are in hospital for a clinic visit or admission I turn into monster Mum! We do not play with toys in the waiting area, or playgrounds. We wash our hands when we get to our room and every visitor is told to wash their hands before entering! I also don't really go near the other patients in our room, keeping our curtains closed as much as the nurses will let us! Its a good thing too, as a fellow patient was changed to infectious, after sneezing, coughing and whatever for three days before his culture came back (Ewwww!).
So please don't visit us, when you are germy and when you do visit us, wash your hands!!
We do not visit or have playdates with anyone who has a cold (or whose family member has a cold), or let them visit us!
If anyone in our house has a cold they stay away from B, quite difficult really (Especially when its me!). Tissues are meant to be thrown away and hands washed after coughing and sneezing. All really basic hygiene, just more emphasis on it in our home!
When we are out, I always carry hand sanitizer which we use before eating/drinking and when leaving places (like the library or shops).
When we are in hospital for a clinic visit or admission I turn into monster Mum! We do not play with toys in the waiting area, or playgrounds. We wash our hands when we get to our room and every visitor is told to wash their hands before entering! I also don't really go near the other patients in our room, keeping our curtains closed as much as the nurses will let us! Its a good thing too, as a fellow patient was changed to infectious, after sneezing, coughing and whatever for three days before his culture came back (Ewwww!).
So please don't visit us, when you are germy and when you do visit us, wash your hands!!
Friday, May 27, 2011
31 Days of May the CF Way - Day 27 My Wish For CF!
OK so I skipped a few days but my plan is to catch up another day!!
Today is 65 Roses day, which I have explained in a previous post. I meant to write about a wish I have for CF and I'm not sure what to write. That I wish I will wake up fand find this has just been a nightmare? So I guess what a lot of us wish for is a cure, make cf stand for cure found not cystic fibrosis. And there has been some great progress in drug studies this year (for genotypes that are not the same as El!)
But my biggest wish is that Cystic Fibrosis will make us stronger as a family and not tear us apart. I know the journey will not be easy, but with lots of prayers I am sure we will get through this.
Oh and for good measure check out this short video!
http://www.youtube.com/watch?v=ng_Cfub6VhM
And for my last post of the month I would like to do a question and answer blog so please send me an email with some questions or it won't work!!
Today is 65 Roses day, which I have explained in a previous post. I meant to write about a wish I have for CF and I'm not sure what to write. That I wish I will wake up fand find this has just been a nightmare? So I guess what a lot of us wish for is a cure, make cf stand for cure found not cystic fibrosis. And there has been some great progress in drug studies this year (for genotypes that are not the same as El!)
But my biggest wish is that Cystic Fibrosis will make us stronger as a family and not tear us apart. I know the journey will not be easy, but with lots of prayers I am sure we will get through this.
Oh and for good measure check out this short video!
http://www.youtube.com/watch?v=ng_Cfub6VhM
And for my last post of the month I would like to do a question and answer blog so please send me an email with some questions or it won't work!!
Wednesday, May 25, 2011
31 Days of May the CF Way - Day 22 A Day in The Life of El
El is a typical 2 year old, and we want her to enjoy her life and not be controlled by CF. So I guess CF is just a part of who she is. I remember at uni they were very strict about using politically correct language. For instance, you couldn't write, 'the autistic child', in assignments you had to write, 'the child with autism'. We used to grumble about it, what difference does it really make? It wasn't until I had El that I realised it is very different.
So here is a day in the life of El, a two year old who just happens to have CF:
6am wake up- straight into physio, pats and PEP
6.45 am - antibiotics 4.5mls, Iron 1ml (every 2nd day), 2 enzymes and a nutrini drink
Plays with brother and sister.
Plate of fruit
9am - breakfast (porridge with cream, milk, honey and golden syrup) 1 or 2 enzymes, vitamin tablet.
normal morning stuff (get dressed, brush teeth etc, play)
10-12 plays or does "school work with the big kids"
12 lunch usually 2 enzymes
sleep time
3pm nutrini drink 2 enazymes, afternoon tea (more enzymes)
we usually go out in the afternoons (shops, sports, park, etc)
5pm dinner (more enzymes, and antibiotics)
bath with Em
story and bed (if well)
or
Physio Pats and PEP
bed (if unwell)
You can see she is a normal child, with physio and lots of tablets to take!!
So here is a day in the life of El, a two year old who just happens to have CF:
6am wake up- straight into physio, pats and PEP
6.45 am - antibiotics 4.5mls, Iron 1ml (every 2nd day), 2 enzymes and a nutrini drink
Plays with brother and sister.
Plate of fruit
9am - breakfast (porridge with cream, milk, honey and golden syrup) 1 or 2 enzymes, vitamin tablet.
normal morning stuff (get dressed, brush teeth etc, play)
10-12 plays or does "school work with the big kids"
12 lunch usually 2 enzymes
sleep time
3pm nutrini drink 2 enazymes, afternoon tea (more enzymes)
we usually go out in the afternoons (shops, sports, park, etc)
5pm dinner (more enzymes, and antibiotics)
bath with Em
story and bed (if well)
or
Physio Pats and PEP
bed (if unwell)
You can see she is a normal child, with physio and lots of tablets to take!!
31 Days of May the CF Way - Day 21 Social Awkwardness
This relates to silly comments other people have made about your child.
The first occasion that springs is when we met an elderly friend of a friend of mine, who had been told that El had cystic fibrosis. She said, "she looks alright for someone who will probably never walk." Um what??? I think she must have mistaken cystic fibrosis for something else! EL was only a few months old and I was completely shocked and probably didn't handle the situation very well! She certainly left with a lot more knowledge of CF then she arrived with!!
Another occasion was quite recently when we were with a group of friends and an 7 year old told El "go away, I don't want to catch your disease!" At the time I didn't know whether to laugh or cry! I did ask the child to clarify what she meant, and the child said, "She didn't want to go to hospital like El." I explained that you couldn't catch her "disease" and that it was called CF for short. The child was then perfectly happy to be around El!
It is hard for people to understand CF, because often times the child looks so well. Even I look at her sometimes and go, how can there be so much wrong? I do try to understand the things that people say from their perspective and hope that I am not too prickly when people say inappropriate things!
The first occasion that springs is when we met an elderly friend of a friend of mine, who had been told that El had cystic fibrosis. She said, "she looks alright for someone who will probably never walk." Um what??? I think she must have mistaken cystic fibrosis for something else! EL was only a few months old and I was completely shocked and probably didn't handle the situation very well! She certainly left with a lot more knowledge of CF then she arrived with!!
Another occasion was quite recently when we were with a group of friends and an 7 year old told El "go away, I don't want to catch your disease!" At the time I didn't know whether to laugh or cry! I did ask the child to clarify what she meant, and the child said, "She didn't want to go to hospital like El." I explained that you couldn't catch her "disease" and that it was called CF for short. The child was then perfectly happy to be around El!
It is hard for people to understand CF, because often times the child looks so well. Even I look at her sometimes and go, how can there be so much wrong? I do try to understand the things that people say from their perspective and hope that I am not too prickly when people say inappropriate things!
Tuesday, May 24, 2011
31 Days of May the CF Way - Day 20 Smoking
Smoking. Well, I think we all know its bad for us, and I guess that you can figure out what that cigarette smoke would do to the thick sticky gunk in El's lungs. So no lectures from me!
Yesterday I was listening to the radio(116am) and they had a call from someone trying to start a smoker's political party! He wanted to bring back smoking in certain areas of planes, trains and restaraunts! I couldn't believe it!! I think that would be very bad for everyone, especailly El! I am glad we have laws restricting places people can smoke because that I can avoid places where there is smoke, and protect El's lungs.
Yesterday I was listening to the radio(116am) and they had a call from someone trying to start a smoker's political party! He wanted to bring back smoking in certain areas of planes, trains and restaraunts! I couldn't believe it!! I think that would be very bad for everyone, especailly El! I am glad we have laws restricting places people can smoke because that I can avoid places where there is smoke, and protect El's lungs.
31 Days of May the CF Way - Day 19 Siblings
I have said before that when a child has a life threatening disease, the whole family has a life threatening disease! CF affects all of our lives in many ways.
In the mornings, El can not eat before her physio, so I don't let the other two eat either. This can make for some rather grumpy starts to the day, and even though I usually get her physio done first thing it does take about 40 minutes!
When El has appointments, the other two get looked after by friends or family, which is fine for now as they love it, but I wonder if they will always like it? They also go to Grandma's when EL has admissions.
Perhaps the biggest thing at the moment is Em questioning why El has physio, enzymes, and medicines. I try my best to answer her questions. This morning the question was, why does El need enzymes. I explained it by saying that CF makes El's body work differently to ours and that enzymes help her digest her food properly. I don't know how much made sense to her though.
I worry about the day they find out how serious CF actually is. I think they have a general idea, but not the full idea. I have always talked openly of death to them, like when their fish died, but I am not sure that anyone can prepare for the death of a loved one.
My biggest worry as they grow is that they might resent that El has CF. But that is what our life is and I hope they will make the most of it.
In the mornings, El can not eat before her physio, so I don't let the other two eat either. This can make for some rather grumpy starts to the day, and even though I usually get her physio done first thing it does take about 40 minutes!
When El has appointments, the other two get looked after by friends or family, which is fine for now as they love it, but I wonder if they will always like it? They also go to Grandma's when EL has admissions.
Perhaps the biggest thing at the moment is Em questioning why El has physio, enzymes, and medicines. I try my best to answer her questions. This morning the question was, why does El need enzymes. I explained it by saying that CF makes El's body work differently to ours and that enzymes help her digest her food properly. I don't know how much made sense to her though.
I worry about the day they find out how serious CF actually is. I think they have a general idea, but not the full idea. I have always talked openly of death to them, like when their fish died, but I am not sure that anyone can prepare for the death of a loved one.
My biggest worry as they grow is that they might resent that El has CF. But that is what our life is and I hope they will make the most of it.
Friday, May 20, 2011
31 Days of May the CF Way - Day 18 The first day I heard that big word (or those big words)!
47% of people born with Cystic Fibrosis aren't expected to live past 18. I have always focused on the fact that the average life expectency of people with CF is mid-thirties, but hearing the other side that my little baby only has about a 50% change of living as an adult really stopped me in my tracks!
changes in the lung (Bronchiectasis) occur in children with CF, as young as five, even if they have no significant history of infections!
pseudomonas- one of the dreaded CF bugs
Cystic Fibrosis Related Diabetes - a diabetes specific to CF that is very common in the older (20's) CF population
Your Child Has a Life Threatening Condition- quite self explanatory really
Pancreatic Enzyme Replacement Therapy(CREON) , ABDEK, Ferrous Sulphate, Timentin, Tobramyacin, Flucloxacillin, and various other drugs that you wish you'd never heard of!!
There are lots of other words that we've heard over the last two years that we wish we had never heard, Cystic Fibrosis for a start. But I picked the ones that really freak me out!!
changes in the lung (Bronchiectasis) occur in children with CF, as young as five, even if they have no significant history of infections!
pseudomonas- one of the dreaded CF bugs
Cystic Fibrosis Related Diabetes - a diabetes specific to CF that is very common in the older (20's) CF population
Your Child Has a Life Threatening Condition- quite self explanatory really
Pancreatic Enzyme Replacement Therapy(CREON) , ABDEK, Ferrous Sulphate, Timentin, Tobramyacin, Flucloxacillin, and various other drugs that you wish you'd never heard of!!
There are lots of other words that we've heard over the last two years that we wish we had never heard, Cystic Fibrosis for a start. But I picked the ones that really freak me out!!
Wednesday, May 18, 2011
31 Days of May the CF Way - Day 17 Hospital admissions what happens
A typical dayof an admission for El.
6am wake up! Hertimentin is given through the iv.
7am the line is flushed and removed, we usually sneak a shower in!
Breakfast arrives! 2 weet bix with milk, cream and salt!
8-10 am physio usually comes
10.30 am morning tea arrives, crisps and breaka
The doctor usually comes around this time.
Other visitors like the dietician and OT or social worker come at this time too.
12.00 hooked back up for tobra iv
lunch comes usually something hot with vegies, yoghurt (the non cf kids get sandwiches!)
1pm iv changed to timentin
she usually has a sleep (and Mummy too)
2-4pm afternoon tea comes (cake or biscuits and soft drink)
physio usually comes again
tobra levels checked (finger or toe prick and squeeze) on days it needs to be checked
5pm dinner comes (similar to lunch, with dessert which is custard or ice cream)
6pm timentin iv
7pm supper arrives (special milk drink and biscuits)
8pm usually asleep (mum gets to watch tv!)
12midnight timentin iv
Our biggest problem over the first 4 days was her cannulas which kept coming out, or getting occluded. So every day she had to have a new one put in. Which meant more nasty needles, and I really don't think the magic cream helps. Although I could be wrong! That is a typical day in the hospital! Multiply that by 14 and you have an admission, (except we escaped on day 7 to do Hospital In The Home!)
6am wake up! Hertimentin is given through the iv.
7am the line is flushed and removed, we usually sneak a shower in!
Breakfast arrives! 2 weet bix with milk, cream and salt!
8-10 am physio usually comes
10.30 am morning tea arrives, crisps and breaka
The doctor usually comes around this time.
Other visitors like the dietician and OT or social worker come at this time too.
12.00 hooked back up for tobra iv
lunch comes usually something hot with vegies, yoghurt (the non cf kids get sandwiches!)
1pm iv changed to timentin
she usually has a sleep (and Mummy too)
2-4pm afternoon tea comes (cake or biscuits and soft drink)
physio usually comes again
tobra levels checked (finger or toe prick and squeeze) on days it needs to be checked
5pm dinner comes (similar to lunch, with dessert which is custard or ice cream)
6pm timentin iv
7pm supper arrives (special milk drink and biscuits)
8pm usually asleep (mum gets to watch tv!)
12midnight timentin iv
Our biggest problem over the first 4 days was her cannulas which kept coming out, or getting occluded. So every day she had to have a new one put in. Which meant more nasty needles, and I really don't think the magic cream helps. Although I could be wrong! That is a typical day in the hospital! Multiply that by 14 and you have an admission, (except we escaped on day 7 to do Hospital In The Home!)
31 Days of May the CF Way - Day 17 Hospital admissions what happens
A typical dayof an admission for El.
6am wake up! Hertimentin is given through the iv.
7am the line is flushed and removed, we usually sneak a shower in!
Breakfast arrives! 2 weet bix with milk, cream and salt!
8-10 am physio usually comes
10.30 am morning tea arrives, crisps and breaka
The doctor usually comes around this time.
Other visitors like the dietician and OT or social worker come at this time too.
12.00 hooked back up for tobra iv
lunch comes usually something hot with vegies, yoghurt (the non cf kids get sandwiches!)
1pm iv changed to timentin
she usually has a sleep (and Mummy too)
2-4pm afternoon tea comes (cake or biscuits and soft drink)
physio usually comes again
tobra levels checked (finger or toe prick and squeeze) on days it needs to be checked
5pm dinner comes (similar to lunch, with dessert which is custard or ice cream)
6pm timentin iv
7pm supper arrives (special milk drink and biscuits)
8pm usually asleep (mum gets to watch tv!)
12midnight timentin iv
Our biggest problem over the first 4 days was her cannulas which kept coming out, or getting occluded. So every day she had to have a new one put in. Which meant more nasty needles, and I really don't think the magic cream helps. Although I could be wrong! That is a typical day in the hospital! Multiply that by 14 and you have an admission, (except we escaped on day 7 to do Hospital In The Home!)
6am wake up! Hertimentin is given through the iv.
7am the line is flushed and removed, we usually sneak a shower in!
Breakfast arrives! 2 weet bix with milk, cream and salt!
8-10 am physio usually comes
10.30 am morning tea arrives, crisps and breaka
The doctor usually comes around this time.
Other visitors like the dietician and OT or social worker come at this time too.
12.00 hooked back up for tobra iv
lunch comes usually something hot with vegies, yoghurt (the non cf kids get sandwiches!)
1pm iv changed to timentin
she usually has a sleep (and Mummy too)
2-4pm afternoon tea comes (cake or biscuits and soft drink)
physio usually comes again
tobra levels checked (finger or toe prick and squeeze) on days it needs to be checked
5pm dinner comes (similar to lunch, with dessert which is custard or ice cream)
6pm timentin iv
7pm supper arrives (special milk drink and biscuits)
8pm usually asleep (mum gets to watch tv!)
12midnight timentin iv
Our biggest problem over the first 4 days was her cannulas which kept coming out, or getting occluded. So every day she had to have a new one put in. Which meant more nasty needles, and I really don't think the magic cream helps. Although I could be wrong! That is a typical day in the hospital! Multiply that by 14 and you have an admission, (except we escaped on day 7 to do Hospital In The Home!)
Monday, May 16, 2011
31 Days of May the CF Way - Day 16 Hospital Mistakes
Thankfully, we have not been part of any major hospital mistakes in our journey so far! But two minor things have happened that have been a little scary!
The first was during El's admission earlier this year. The night before her GA for her PICC line the anaesthetist came to see us and we went through all the paperwork, signed her life away, and just before she left she said, No food after 6 am and no water after 10am.
The next morning at 5.45am I buzzed the nurse and asked for an early breakfast. Oh no, says the nurse, she doesn't have to fast till 8. She checked her paperwork which said 8am. I said no the anaesthetist said six. Anyway, even though she didn't agree with me I insisted that El have her early breakfast.
At about 12.30pm the nurse in charge comes in, clearly agitated and says, we have given her food too late, she won't be able to have surgery. I said, she has had nothing since six. She said, but the paperwork was wrong. I said I know but I did what the anaesthetist said to do. No food after 6am.
Thankfully, I didn't listen to the nurses and stood my ground on that one and El was able to have her surgery that day!!
The other instance was just recently at clinic. An OT came in to see us, a new one again! She starts with, we understand that the OT you usually see is concerned with El's speech and has spoken to you about it. I said No, I haven't heard anything, and I have no concerns. Oh, sorry I must be getting you mixed up with someone else. She went and checked and yep she had the wrong patient!!
Thankfully,my stories have only been minor mistakes.
Some stories I have heard from other CF Mum's are truly scary!
The first was during El's admission earlier this year. The night before her GA for her PICC line the anaesthetist came to see us and we went through all the paperwork, signed her life away, and just before she left she said, No food after 6 am and no water after 10am.
The next morning at 5.45am I buzzed the nurse and asked for an early breakfast. Oh no, says the nurse, she doesn't have to fast till 8. She checked her paperwork which said 8am. I said no the anaesthetist said six. Anyway, even though she didn't agree with me I insisted that El have her early breakfast.
At about 12.30pm the nurse in charge comes in, clearly agitated and says, we have given her food too late, she won't be able to have surgery. I said, she has had nothing since six. She said, but the paperwork was wrong. I said I know but I did what the anaesthetist said to do. No food after 6am.
Thankfully, I didn't listen to the nurses and stood my ground on that one and El was able to have her surgery that day!!
The other instance was just recently at clinic. An OT came in to see us, a new one again! She starts with, we understand that the OT you usually see is concerned with El's speech and has spoken to you about it. I said No, I haven't heard anything, and I have no concerns. Oh, sorry I must be getting you mixed up with someone else. She went and checked and yep she had the wrong patient!!
Thankfully,my stories have only been minor mistakes.
Some stories I have heard from other CF Mum's are truly scary!
Sunday, May 15, 2011
31 Days of May the CF Way - Day 15 Fatigue Silly Stuff You Did When Tiredb
The silly stuff I do! The list could be endless! Actually now that I've thought about it I probably shouldn't admit to some of the things I was was thinking of writing. So here is the short version!
On numerous occasions I have added salt to the wrong child's drink! They quickly let me know about that one!
I have fallen asleep doing El's PEP mask! Its the rest between each one that get me.
I also do normal tired busy Mummy stuff. Like call the wrong child. Put Em's clothes on El or worse put El's clothes on Em! Put the wrong milk on each cereal, the list is endless.
I love it when J says, Mum you make lots of mistakes, but we love you anyway!! (i wonder where they have heard that before???)
On numerous occasions I have added salt to the wrong child's drink! They quickly let me know about that one!
I have fallen asleep doing El's PEP mask! Its the rest between each one that get me.
I also do normal tired busy Mummy stuff. Like call the wrong child. Put Em's clothes on El or worse put El's clothes on Em! Put the wrong milk on each cereal, the list is endless.
I love it when J says, Mum you make lots of mistakes, but we love you anyway!! (i wonder where they have heard that before???)
31 Days of May the CF Way - Day 14 Out of the mouths of babes
Two stories for this one. The first is one that I have stolen and is common in the CF community. I have heard quite a few different versions of the story, each of them special.
65 Roses
The phrase "65 roses" is simply another way of saying cystic fibrosis. It came into being in 1965 when a young boy with cystic fibrosis overheard his mother talking about the disease on the phone. When she said the words “cystic fibrosis”, he thought she said “65 roses”. The mother was touched by her son’s mistake because he saw something beautiful in a disease that can often be quite ugly.
taken from
http://cysticfibrosis.about.com/od/cysticfibrosis101/f/65roses.htm
The second story is one from our own lives.
We were out at a playground, and I was chatting to other mothers, Em was listening to our conversation, we were talking about discipline I can't remember the exact conversation but smacking definately was part of it. Em's comment was. " It's ok, because Mum says we HAVE to bash EL up." Yes, there were a few dirty looks and I didn't particularly feel like explaining that we called physio bashing up sometimes, or even that we did physio and why!! Needless to say we left soon after. I must say I don't call physio, bashing up time so much anymore!
65 Roses
The phrase "65 roses" is simply another way of saying cystic fibrosis. It came into being in 1965 when a young boy with cystic fibrosis overheard his mother talking about the disease on the phone. When she said the words “cystic fibrosis”, he thought she said “65 roses”. The mother was touched by her son’s mistake because he saw something beautiful in a disease that can often be quite ugly.
taken from
http://cysticfibrosis.about.com/od/cysticfibrosis101/f/65roses.htm
The second story is one from our own lives.
We were out at a playground, and I was chatting to other mothers, Em was listening to our conversation, we were talking about discipline I can't remember the exact conversation but smacking definately was part of it. Em's comment was. " It's ok, because Mum says we HAVE to bash EL up." Yes, there were a few dirty looks and I didn't particularly feel like explaining that we called physio bashing up sometimes, or even that we did physio and why!! Needless to say we left soon after. I must say I don't call physio, bashing up time so much anymore!
31 Days of May the CF Way - Day 13 $ Signs
As I've said before we are extremely blessed in Australia to have the PBS. El also has a health care card which gives us further discounts off medicines.
Every prescription costs about $6, and there are quite a few over the course of a month. Another CF Mum has two children with CF and counted 37 prescription medicines that her children need!
So far all of EL's equipment for physio has been donated to us by Cystic Fibrosis Queensland. However, sometime in the future El will need a nebuliser at a cost of about $1500 and parts to go along with it!
Parking, each time we go to the hospital it costs about $20 to park, which is not too bad once every six weeks but sometimes we have had two or even three visits in a week. Some of these visits are Em's for cleft related appointments.
Admissions. No matter how you work it admissions seem to be expensive. I'm not really sure why, but we spend more money when we are inside.
Unfortunately as CF is a progressive disease the cost we will incur will probably rise in the future as she requires more medicine, more nebulisers and more hospital admissions. However, I would say that the biggest cost is not measured in dollars but in the effect that this disease has on our daily lives. Not just El but J and Em and A and I, and our extended family.
Every prescription costs about $6, and there are quite a few over the course of a month. Another CF Mum has two children with CF and counted 37 prescription medicines that her children need!
So far all of EL's equipment for physio has been donated to us by Cystic Fibrosis Queensland. However, sometime in the future El will need a nebuliser at a cost of about $1500 and parts to go along with it!
Parking, each time we go to the hospital it costs about $20 to park, which is not too bad once every six weeks but sometimes we have had two or even three visits in a week. Some of these visits are Em's for cleft related appointments.
Admissions. No matter how you work it admissions seem to be expensive. I'm not really sure why, but we spend more money when we are inside.
Unfortunately as CF is a progressive disease the cost we will incur will probably rise in the future as she requires more medicine, more nebulisers and more hospital admissions. However, I would say that the biggest cost is not measured in dollars but in the effect that this disease has on our daily lives. Not just El but J and Em and A and I, and our extended family.
Thursday, May 12, 2011
31 days of May the CF way Cracking Point: the day I really cracked
Apart from when I initially found out about El having CF (and I really cracked that day). I think the most crazy i have gotten is the days we have been released from hospital. I think that holding it all together while we are inside really takes a toll on me. I remember after El's first admission A was driving us home and he put on one of the songs I like and it made me cry!! Poor A didn't know what to think.
I also tend to get a little angry at smokers! Which is totally unfair of me. I remember one smoker in particular was smoking near a mcdonalds playground and I was ranting and raving like a complete lunatic, from the safety of my car with the windows up so he couldn't hear! It was completly irrational on my part! J and Em were a little freaked out by my behaviour. I usually do not go on like that. I am usually a quiet, internally angry sort of person!
I also tend to get a little angry at smokers! Which is totally unfair of me. I remember one smoker in particular was smoking near a mcdonalds playground and I was ranting and raving like a complete lunatic, from the safety of my car with the windows up so he couldn't hear! It was completly irrational on my part! J and Em were a little freaked out by my behaviour. I usually do not go on like that. I am usually a quiet, internally angry sort of person!
31 Days of May the CF Way - Day 11 P words
Pseudomonas Aeruginosa is a common bacterium that can cause disease.It is found in water, soil, skin flora and most man made environments in the world. ( I took this information from Wikipedia)
This bug causes a lot of damage in CF lungs. Once it is there it is really hard to get rid of. Thankfully El has not had this bug yet. Although we have been warned about it since we first found out that El has CF. I dread the day when we hear El has cultured Pseudomonas.
Physiotherapy
Part ofEl's daily regime is twice a day physio or airway clearance. This takes about 30-40 minutes each time. This is to combat the build up of thick sticky mucus on the lungs, which helps to reduce infection and prevent lung damage.
Positive Expiration Pressure (PEP)
THis involves using a special mask which El breathes into. IT opens up the small airways allowing mucus to be moved out of the lungs. This is a big part of B's physiotherapy.
PICC line
Peripherally inserted central Catheter. A form of intravenous access. El had her first PICC line this year. It was put in under a general anaethetic. It was inserted, near her elbow and went through a vein up her arm towards her chest. It was removed when she was awake.
Poop
CF affects the pancreas and makes it difficult for people with CF to absorb food. This causes lots of large, smelly, greasy stools. And when I say smelly I mean smelly!!! El'senzymes (Creon) are given to help her digest her food properly and reduce these symptoms.
PEG
Percutaneous (through the skin) Endoscopic Gastrotomy (stomach tube). This is used to give supplementary feeds to CF'ers who can't maintain their weight. Not something we need just yet.
Port
(portacath) A small deviced placed beneath the skin, providing more permanent iv access. Usually given to CF patients who require frequent iv treatment.
Information taken from wikipedia and Cystic fibrosis australia websites
This bug causes a lot of damage in CF lungs. Once it is there it is really hard to get rid of. Thankfully El has not had this bug yet. Although we have been warned about it since we first found out that El has CF. I dread the day when we hear El has cultured Pseudomonas.
Physiotherapy
Part ofEl's daily regime is twice a day physio or airway clearance. This takes about 30-40 minutes each time. This is to combat the build up of thick sticky mucus on the lungs, which helps to reduce infection and prevent lung damage.
Positive Expiration Pressure (PEP)
THis involves using a special mask which El breathes into. IT opens up the small airways allowing mucus to be moved out of the lungs. This is a big part of B's physiotherapy.
PICC line
Peripherally inserted central Catheter. A form of intravenous access. El had her first PICC line this year. It was put in under a general anaethetic. It was inserted, near her elbow and went through a vein up her arm towards her chest. It was removed when she was awake.
Poop
CF affects the pancreas and makes it difficult for people with CF to absorb food. This causes lots of large, smelly, greasy stools. And when I say smelly I mean smelly!!! El'senzymes (Creon) are given to help her digest her food properly and reduce these symptoms.
PEG
Percutaneous (through the skin) Endoscopic Gastrotomy (stomach tube). This is used to give supplementary feeds to CF'ers who can't maintain their weight. Not something we need just yet.
Port
(portacath) A small deviced placed beneath the skin, providing more permanent iv access. Usually given to CF patients who require frequent iv treatment.
Information taken from wikipedia and Cystic fibrosis australia websites
Wednesday, May 11, 2011
31 Days of May the CF Way - Day 10 Pros and Cons
A would say I was a negative person ( I prefer realistic) , but for once I am going to focus more on the positives!
Cons
CF Sucks! Nothing more to say really.
Pros
Living in Australia we are at a distinct advantage to people in other countries who have CF. The PBS makes our life easier and less expensive compared with other countries.
I hope that my children will have more compassion for people who are different.
The people we have met in the hospital, at CF events and in daily life
The internet- I often wonder how mothers coped before the internet. (Our children can never meet due to the risk of cross infection). The internet is a fantastic tool for us to connect.
Good friends - All of those who are just there when I need them, who watch the other kids when we have appointments or emergency visits to the hospital. Those who listen when i go on about CF things. And those who don't ask too many questions! Love you all! You make our journey easier!
Family who put their lives on hold for us, do washing when we are in hospital, keep the big kids, etc, etc, etc....
Learning what really matters in life!! Not worrying about the small stuff so much!
Cons
CF Sucks! Nothing more to say really.
Pros
Living in Australia we are at a distinct advantage to people in other countries who have CF. The PBS makes our life easier and less expensive compared with other countries.
I hope that my children will have more compassion for people who are different.
The people we have met in the hospital, at CF events and in daily life
The internet- I often wonder how mothers coped before the internet. (Our children can never meet due to the risk of cross infection). The internet is a fantastic tool for us to connect.
Good friends - All of those who are just there when I need them, who watch the other kids when we have appointments or emergency visits to the hospital. Those who listen when i go on about CF things. And those who don't ask too many questions! Love you all! You make our journey easier!
Family who put their lives on hold for us, do washing when we are in hospital, keep the big kids, etc, etc, etc....
Learning what really matters in life!! Not worrying about the small stuff so much!
Tuesday, May 10, 2011
31 Days of May the CF Way - Day 9 Greatest Milestone or Biggest Challengeb
31 Days of May the CF Way - Day 9 Greatest Milestone or Biggest Challenge
Greatest Milestone
I think that since finding out that my child has a life threatening condition, life has a different perspective. I tend to look at life as more of a gift. Thinking along those lines I see El's greatest milestones the same as any other child(walking, talking, birthdays, etc) , but perhaps we celebrate a little more and are more thankful to see her reach those milestones?
Biggest Challenge
I think that at the moment our biggest challenge is to get El's weight going up instead of down!( I keep telling her she can have some of my excess but I don't think she is listening.!)
Greatest Milestone
I think that since finding out that my child has a life threatening condition, life has a different perspective. I tend to look at life as more of a gift. Thinking along those lines I see El's greatest milestones the same as any other child(walking, talking, birthdays, etc) , but perhaps we celebrate a little more and are more thankful to see her reach those milestones?
Biggest Challenge
I think that at the moment our biggest challenge is to get El's weight going up instead of down!( I keep telling her she can have some of my excess but I don't think she is listening.!)
Sunday, May 8, 2011
31 Days of May the CF Way - Day 8 Non Compliance
El is on the whole a fairly good patient! However, we do have a few troubles! Occasionally El does not want to do her PEP physio, so we have to pin her down and shove the mask on her face! She is much better now then she used to be and only gets upset if she wants to be doing something else (like eating or wanting a toy!). It can be difficult because she can't eat for about an hour before physio as it tends to make her throw up.
A few months ago we had a very difficult time with her enzymes, she just refused to take them. At that time we were giving them once she had begun eating to see how much she would eat. We had to change our plan of attack. Now we give her enzymes first and she can not have food until she has taken them. Sometimes it takes a while (up to an hour) but she does take them!
At the moment she does not like the tast of her antibiotics so we have to pin her down and force feed her. Thankfully we have had experience with Em and have almost perfected the giving of oral medications to a non compliant child.
I hate having to force El to do things she doesn't want to and to take medicine that she doesn't like. Each day is a battle in some way or another and it is very tiring. However, it is a battle that has to be won. I think in some ways the age she is at (2) makes it fairly easy. I have grave fears that as she grows the battle we become harder rand longer. I know the day will come when she will be 100% responsible for herself. Thankfully I only have to get through one day at a time, one battle at a time!!!
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A few months ago we had a very difficult time with her enzymes, she just refused to take them. At that time we were giving them once she had begun eating to see how much she would eat. We had to change our plan of attack. Now we give her enzymes first and she can not have food until she has taken them. Sometimes it takes a while (up to an hour) but she does take them!
At the moment she does not like the tast of her antibiotics so we have to pin her down and force feed her. Thankfully we have had experience with Em and have almost perfected the giving of oral medications to a non compliant child.
I hate having to force El to do things she doesn't want to and to take medicine that she doesn't like. Each day is a battle in some way or another and it is very tiring. However, it is a battle that has to be won. I think in some ways the age she is at (2) makes it fairly easy. I have grave fears that as she grows the battle we become harder rand longer. I know the day will come when she will be 100% responsible for herself. Thankfully I only have to get through one day at a time, one battle at a time!!!
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31 Days of May the CF Way - Day 7 school
I really can't write anything about this topic as none of the kids have ever been in school or daycare so hopefully I will get permission to post one of my cf friend's day 7 so you can all read it!! I must say that homeschooling does allow us to be fairly flexible regarding appointments and treatments and even hospitalisation (thanks Mum for doing the older children's schoolwork when we are in hospital!)
Friday, May 6, 2011
31 days of may the cf way - day 6 clinic
Just thinking about clinic makes me nervous for days ahead (poor A cops a stressed out wife- warning A clinic is on monday)! I'm not sure why I get so stressed, I think perhaps it is all the people you have to see and all the questions they ask and the fact that CF is so unpredictable! So a typical clinic for us, means leaving home early. Generally I try to get somewone to keep J and Em, but this week they are coming along as we have to get to homeschool classes straight after!
Once we get there we see the receptionist and the questions begin. Then we wait in a waiting area and avoid sitting close to anyone else (due to the risk of cross infection people with cf are not meant to be closer then 1m apart). Then a nurse takes us to the scales and we weigh and measure El, which she usually screams for! Then we are taken to our own room, where we wait ...
...For the doctor, never the same one which drives me mad. The doctor asks lots of questions and listens to El's chest and pokes her tummy (both of which El screams through!). and then we wait...
...For the physio, who asks more question. And generally takes a cough swab (sticks a cotton bud kind of thing down Em's throat) (which she screams through -can't blame her for screaming for this one). And then we wait..
...for the dietician who checks her growth chart,asks what El eats in a typical day, and makes suggestions on what we could improve and then we wait....
... for the occupational therapist who asks lots of questions and offers support and ideas for giving/taking medications, and doing physio etc... Not someone we have needed to use a lot so far, but I think will become more important over the next few years.... and then we wait...
... for the social worker, who asks lots of questions and then we usually wait.....
.... to the nurse to check if we can leave!
Then we visit the receptionist to make a new appointment, generally in another 6-8 weeks!
That is a typical clinic visit at the moment. lots of screaming, lots of questions and a heap of waiting around. After clinic I am usually so exhausted that I go home and get nothing done for the rest of the day!
Once we get there we see the receptionist and the questions begin. Then we wait in a waiting area and avoid sitting close to anyone else (due to the risk of cross infection people with cf are not meant to be closer then 1m apart). Then a nurse takes us to the scales and we weigh and measure El, which she usually screams for! Then we are taken to our own room, where we wait ...
...For the doctor, never the same one which drives me mad. The doctor asks lots of questions and listens to El's chest and pokes her tummy (both of which El screams through!). and then we wait...
...For the physio, who asks more question. And generally takes a cough swab (sticks a cotton bud kind of thing down Em's throat) (which she screams through -can't blame her for screaming for this one). And then we wait..
...for the dietician who checks her growth chart,asks what El eats in a typical day, and makes suggestions on what we could improve and then we wait....
... for the occupational therapist who asks lots of questions and offers support and ideas for giving/taking medications, and doing physio etc... Not someone we have needed to use a lot so far, but I think will become more important over the next few years.... and then we wait...
... for the social worker, who asks lots of questions and then we usually wait.....
.... to the nurse to check if we can leave!
Then we visit the receptionist to make a new appointment, generally in another 6-8 weeks!
That is a typical clinic visit at the moment. lots of screaming, lots of questions and a heap of waiting around. After clinic I am usually so exhausted that I go home and get nothing done for the rest of the day!
31 Days of May the CF Way - Day 5 Diet, Fat, Calories & Creonsb
People with cystic fibrosis use a lot of energy to breathe and go about their daily business. As a result of this they need about 150-200% of the energy requirements of a normal person. To help El meet her daily needs we add fat to most things she eats. For example J and Em might have porridge for breakfast with milk and honey. El will have hers with cream, milk (full fat), salt, and honey. For salds I coat hers in olive oil. I add coconut oil or butter to pasta with sauce. Custard and yoghurt we add cream to. When J and Em have juice she has chocolate milk with 9g of fat. We constantly try to get as many calories in each mouthful of food as possible.
With the extra additions to her food and choosing high fat options, El has been able to grow at a normal rate. Except for when she is sick. Remember how tired you feel when you are sick? That is because your body uses up extra energy to heal itself. When she is sick EL tends to lose weight and her appetite decreases, not a great combination! I made up my mind during her first admission that I would never force feed her or stress (outwardly) about how much she is or isn't eating. I do not want to make eating stressful for her.
I am becoming quite expert at judging how much fat is in various kinds of food, and working out how many enzymes (creon) she needs!
With the extra additions to her food and choosing high fat options, El has been able to grow at a normal rate. Except for when she is sick. Remember how tired you feel when you are sick? That is because your body uses up extra energy to heal itself. When she is sick EL tends to lose weight and her appetite decreases, not a great combination! I made up my mind during her first admission that I would never force feed her or stress (outwardly) about how much she is or isn't eating. I do not want to make eating stressful for her.
I am becoming quite expert at judging how much fat is in various kinds of food, and working out how many enzymes (creon) she needs!
Wednesday, May 4, 2011
31 Days of May The CF Way - Day 4 Admissions
31 Days of May The CF Way - Day 4 Admissions
El has had 3 admissions.
Admission 1 - I wrote about on day 2 the first year
Admission 2
Was also in her first year. she was ten months old and it was the week after christmas. She had been ill all through christmas we were doing at least 3 physio sessions a day, she was put on antibiotics but she wasn't improving.On the 27th of December she almost completely stopped eating and drinking not even breast milk. I took her into emergency and she was admitted. They didn't really do much. They put in an ng tube which she promptly pulled out. They also weighed all her nappies to see how much fluid there was. They took bloods and continued on with her antibiotics. Over the next day she bagan to improve and they found out that she had adeno virus. So after watching her for a further 24 hours and seeing that she was continuing to improve they let us go home. We were in for 3 days. A nice short stay.We were home for new years too which was lovely!
Admission 3 was only 2 months ago, and was her first more serious admission (in my opinion) El had an awful cough for a number of weeks before her annual review and had been on a couple of different antibiotics. At her annual review they decided to try two antibiotics together and bring her in for outpatients physio appointments keep an eye on her. I took all three kids and attended the physio appointment on the Friday and were planning to go to the museum with friends after. The physio rang to speak to the nurse who asked us to come and see the doctor who said that El needed to be admitted that day for about two weeks. (we were supposed to go to the beach for a week the following Monday so I was really unhappy - thankfully we were able to rebook for a few weeks later). I was shocked that she needed to be admitted that day!
So I left the two older kids with my friend for their museum trip and took El home and packed and headed back to prison (I mean hospital). I remember speaking to my friend and saying that I could handle anything as long as we could have our own room. Well of course we had to share a 3-bed room. Have i mentioned that I am a bit of a loner and hate having people around all the time. To put it mildly I was really unhappy - an admission, no holiday and sharing with 2 other patients and their famillies.
A and J and Em visited on the Saturday before the kids went to stay with Mum. I hate not having A and the children with me and find this the most difficult part of each admission.
I found out that El couldn't have a PICC line inserted until the Tuesday, so I knew we would have cannulas which have never gone well with El. She went through one every day before she got her PICC line on the Tuesday. On top of the 4 cannulas the levels of one of the drugs she was on had to be checked as too much can have dangerous side effects such as liver damage and hearing loss. This was done by finger prick and then squeezing blood out of her finger or toe. She had her levels tested twice as the first time it was too low.
El also had two physio sessions per day. At home she tolerates her physio fairly well. but in hospital it was terrible. Almost every session she had a different person and she was not happy, screaming and crawling off the bed to get away!! I started leaving because it didn't seem to be quite so bad if I was not there.
It came to the point that when anyone walked through our curtain El would hide behind me. Except for the people with food!! I have never seen her eat as much as she did those days in hospital! She gained 700g in the two weeks she was on antibiotics!
On the Tuesday El had a general and her PICC line was inserted. Other then being really tired she recovered quite well. It did bring back a lot of the memories of Em's surgeries, but at least I could recognise EL after the operation!! (after Em's lip repair I kept walking past her in the hospital because she looked so different!
The PICC line made life much easier!! She was hooked up to a bottle, which meant she could move much more freely. That afternoon the Hospital in the Home (HITH) nurse came and spoke to us about finishing her treatment at home! It depended on them getting her drug levels correct. So the levels were checked that night and were found to be good. so we could go home!!!!!
We left on the Wednesday night and for the remainder of the two weeks had physio at home twice a day and the nurse once a day to change her medicine! It was fantastic. The only trouble we had was her arm became a little red and sore so we spent the Sunday in the hospital to make sure it was ok, which it was. Also one of the bottles of medicine burst but we were on our way to clinic anyway!
On the Friday two weeks later the PICC line was removed, which she hated, and was disgusting. (thankfully I had watched on you tube (yes A I had to see) so knew kind of what to expect). It was such a relief that the two weeks were finished. I am so thankful that we could do HITH, as sharing a room was driving me crazy!!!
I know I keep saying that having our family split up is actually the worst part but it really is awful. They say that when a child has a life threatening illness, its not just the child who has the illness but the whole family, and I can not find the words to say how true that is!
El has had 3 admissions.
Admission 1 - I wrote about on day 2 the first year
Admission 2
Was also in her first year. she was ten months old and it was the week after christmas. She had been ill all through christmas we were doing at least 3 physio sessions a day, she was put on antibiotics but she wasn't improving.On the 27th of December she almost completely stopped eating and drinking not even breast milk. I took her into emergency and she was admitted. They didn't really do much. They put in an ng tube which she promptly pulled out. They also weighed all her nappies to see how much fluid there was. They took bloods and continued on with her antibiotics. Over the next day she bagan to improve and they found out that she had adeno virus. So after watching her for a further 24 hours and seeing that she was continuing to improve they let us go home. We were in for 3 days. A nice short stay.We were home for new years too which was lovely!
Admission 3 was only 2 months ago, and was her first more serious admission (in my opinion) El had an awful cough for a number of weeks before her annual review and had been on a couple of different antibiotics. At her annual review they decided to try two antibiotics together and bring her in for outpatients physio appointments keep an eye on her. I took all three kids and attended the physio appointment on the Friday and were planning to go to the museum with friends after. The physio rang to speak to the nurse who asked us to come and see the doctor who said that El needed to be admitted that day for about two weeks. (we were supposed to go to the beach for a week the following Monday so I was really unhappy - thankfully we were able to rebook for a few weeks later). I was shocked that she needed to be admitted that day!
So I left the two older kids with my friend for their museum trip and took El home and packed and headed back to prison (I mean hospital). I remember speaking to my friend and saying that I could handle anything as long as we could have our own room. Well of course we had to share a 3-bed room. Have i mentioned that I am a bit of a loner and hate having people around all the time. To put it mildly I was really unhappy - an admission, no holiday and sharing with 2 other patients and their famillies.
A and J and Em visited on the Saturday before the kids went to stay with Mum. I hate not having A and the children with me and find this the most difficult part of each admission.
I found out that El couldn't have a PICC line inserted until the Tuesday, so I knew we would have cannulas which have never gone well with El. She went through one every day before she got her PICC line on the Tuesday. On top of the 4 cannulas the levels of one of the drugs she was on had to be checked as too much can have dangerous side effects such as liver damage and hearing loss. This was done by finger prick and then squeezing blood out of her finger or toe. She had her levels tested twice as the first time it was too low.
El also had two physio sessions per day. At home she tolerates her physio fairly well. but in hospital it was terrible. Almost every session she had a different person and she was not happy, screaming and crawling off the bed to get away!! I started leaving because it didn't seem to be quite so bad if I was not there.
It came to the point that when anyone walked through our curtain El would hide behind me. Except for the people with food!! I have never seen her eat as much as she did those days in hospital! She gained 700g in the two weeks she was on antibiotics!
On the Tuesday El had a general and her PICC line was inserted. Other then being really tired she recovered quite well. It did bring back a lot of the memories of Em's surgeries, but at least I could recognise EL after the operation!! (after Em's lip repair I kept walking past her in the hospital because she looked so different!
The PICC line made life much easier!! She was hooked up to a bottle, which meant she could move much more freely. That afternoon the Hospital in the Home (HITH) nurse came and spoke to us about finishing her treatment at home! It depended on them getting her drug levels correct. So the levels were checked that night and were found to be good. so we could go home!!!!!
We left on the Wednesday night and for the remainder of the two weeks had physio at home twice a day and the nurse once a day to change her medicine! It was fantastic. The only trouble we had was her arm became a little red and sore so we spent the Sunday in the hospital to make sure it was ok, which it was. Also one of the bottles of medicine burst but we were on our way to clinic anyway!
On the Friday two weeks later the PICC line was removed, which she hated, and was disgusting. (thankfully I had watched on you tube (yes A I had to see) so knew kind of what to expect). It was such a relief that the two weeks were finished. I am so thankful that we could do HITH, as sharing a room was driving me crazy!!!
I know I keep saying that having our family split up is actually the worst part but it really is awful. They say that when a child has a life threatening illness, its not just the child who has the illness but the whole family, and I can not find the words to say how true that is!
Tuesday, May 3, 2011
31 Days of May the CF Way - Day 3 Medications
El's Current Medications
1 capsule creon 5000 per 3g fat
1 capsule creon 10000 per 6g fat
1 capsule abdek vitamins per day
(all taken in apple puree with salt)
1ml iron every 2nd day
5mls antibiotic every six hours (1/2 an hour before or 2 hours after food) ( yes I do get up in the middle of the night fo that one).
Creon is taken with everything she eats, which means she takes about 10 per day. Creon helps her to absorb her food, as her pancreatic ducts are blocked. We also add salt to everything she eats and drinks. She also has a high fat diet as she requires more calories to achieve normal growth.
We have one section of our fridge entirely dedicated to her medicines and another one which is half hers!
This list can vary and gets more complicated if she gets sick and more medicines get added in. Back in February before her admission she was on two antibiotics, which both had different times to be given. Luckily I have a special book where I keep track of medicines, physio and any communication I have with nurses, GP's etc... Funnily enough A didn't even know this book existed until recently!!!
1 capsule creon 5000 per 3g fat
1 capsule creon 10000 per 6g fat
1 capsule abdek vitamins per day
(all taken in apple puree with salt)
1ml iron every 2nd day
5mls antibiotic every six hours (1/2 an hour before or 2 hours after food) ( yes I do get up in the middle of the night fo that one).
Creon is taken with everything she eats, which means she takes about 10 per day. Creon helps her to absorb her food, as her pancreatic ducts are blocked. We also add salt to everything she eats and drinks. She also has a high fat diet as she requires more calories to achieve normal growth.
We have one section of our fridge entirely dedicated to her medicines and another one which is half hers!
This list can vary and gets more complicated if she gets sick and more medicines get added in. Back in February before her admission she was on two antibiotics, which both had different times to be given. Luckily I have a special book where I keep track of medicines, physio and any communication I have with nurses, GP's etc... Funnily enough A didn't even know this book existed until recently!!!
Monday, May 2, 2011
Day 2 "The first year"
A lot of the memories of the first year with El are hazy. I think I somewhat existed just by plodding through the day one step at a time. A few times do stand out to me, so I will write about those.
I remember the first time we went away after El's diagnosis, for a couple of nights, and how deeply it struck me that even though we were on holiday we still had to do all of El's medicines and physio, that there would never be a holiday from them. Not on birthdays, christmas or holidays. That we could never escape from CF.
Another time that stands out is her first cold, which was very stressful. Although I had two other children and knew what was ok for them and what wasn't, the "rules" were very different for her.
Along with her first year came her first admission at 6 months. She had a terrible cough for about six weeks before she was admitted. Unfortunately we were in the same ward that Em had been in, where I had had an awful experience. Thankfully it was much better with El. We also had our own room which was wonderful, I had shared for all admissions with Em except one. We stayed in for nine days, but were able to escape for walks sometimes, which was nice. THe hardest part is being separated from A, and J and Em. I also get awfully sick of all the questions, all the time when I'm in the hospital. And having to talk to so many people. I really prefer to be alone then have people all around me 24 hours a day!
I am sure there are about a million other stories I could tell. but they are the things that really stick out in my mind about the first year.
I remember the first time we went away after El's diagnosis, for a couple of nights, and how deeply it struck me that even though we were on holiday we still had to do all of El's medicines and physio, that there would never be a holiday from them. Not on birthdays, christmas or holidays. That we could never escape from CF.
Another time that stands out is her first cold, which was very stressful. Although I had two other children and knew what was ok for them and what wasn't, the "rules" were very different for her.
Along with her first year came her first admission at 6 months. She had a terrible cough for about six weeks before she was admitted. Unfortunately we were in the same ward that Em had been in, where I had had an awful experience. Thankfully it was much better with El. We also had our own room which was wonderful, I had shared for all admissions with Em except one. We stayed in for nine days, but were able to escape for walks sometimes, which was nice. THe hardest part is being separated from A, and J and Em. I also get awfully sick of all the questions, all the time when I'm in the hospital. And having to talk to so many people. I really prefer to be alone then have people all around me 24 hours a day!
I am sure there are about a million other stories I could tell. but they are the things that really stick out in my mind about the first year.
31 Days of May the CF Way - Day 1 Diagnosis
After having a super stressful first year with my second child, (Em had a cleft lip and palate, which meant three operations in her first 14 months, expressing milk, and feeding difficulties and lots of appointments) I was looking forward to having a nice normal baby. El had her heel prick test done at home and I didn't think anything more of it. I was a little concerned about a few things I had noticed and couldn't shake the feeling that something was wrong, but didn't share my feelings with anyone.
We had just arrived home from swimming at about 10am on a Wednesday. El was asleep so I left J and Em playing and decided to have a lie down, when the phone rang. J answered and brought it in to me. The person on the phone said, Hi I am doctor such and such and I am phoning to tell you that El has had a positive result to one of her heel prick tests. I said which one. and she said, cystic fibrosis. My initial thoughts were of cerebal palsy and I thought no they've got it wrong. Then it clicked, I said that is a problem with the lungs? she said yes that is when I completly lost it and she said that somewone from the children's hospital would ring. And I was left alone. I had to calm down and phone A and tell him and wait for the hospital to phone.
We went to the hospital the next day and were introduced to a world of medication, physio, dieticians, social workers and realised that our lives would never be the same- ever.
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We had just arrived home from swimming at about 10am on a Wednesday. El was asleep so I left J and Em playing and decided to have a lie down, when the phone rang. J answered and brought it in to me. The person on the phone said, Hi I am doctor such and such and I am phoning to tell you that El has had a positive result to one of her heel prick tests. I said which one. and she said, cystic fibrosis. My initial thoughts were of cerebal palsy and I thought no they've got it wrong. Then it clicked, I said that is a problem with the lungs? she said yes that is when I completly lost it and she said that somewone from the children's hospital would ring. And I was left alone. I had to calm down and phone A and tell him and wait for the hospital to phone.
We went to the hospital the next day and were introduced to a world of medication, physio, dieticians, social workers and realised that our lives would never be the same- ever.
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31days of may the CF Way
On facebook a group has organised an awarness campaign for the 31 days of may so each day I'm going post about a different topic. For the whole of May.
Wednesday, April 6, 2011
speech
Today miss Em had a speech assessment. She hasn't been for about six months, but she went really well. She has some air escaping from a small hole left after her palate repair, but it is not too bad and will be fixed (hopefully) when she has her bone graft in the future. She has some trouble with the 's', 'sh', 'ch' and 'j' sounds. So she will have some more speech therapy towards the middle of the year when she can be fit in. I am so proud of her for trying so hard with the speech therapy students who did the assessment!
Saturday, March 12, 2011
We are all finished with iv's for now! It was a crazy couple of weeks. I love hospital in the home, it was so much better then being locked up in 1/3rd of a hospital room and having people in and out all day and night. Miss El was much more relaxed at home and me too. Getting the PICC line out wasn't too bad. Of course she screamed while having the tape off, but the actual line coming out she wasn't upset. She demanded a bandaid be put on over the mark once the cotton wool and tape came off, and the bandaid I used made her all red and sore, you can still see the mark it left (as well as the mark from the PICC line).
We have had a nice quiet week this week. Moncay was our busiest day, with the big kids starting classes with a home school group. J is doing art and Spanish, and Em is doing drama and a sport class. Drama doesn't start until next week but all the other classes were wonderful. Em wants to do art now, but I said she would have to choose that next term if she was still keen. J had tennis and we went shopping, and did school work. Like I said a nice quiet week, after a crazy couple of weeks.
May the quiet continue for a long time!
We have had a nice quiet week this week. Moncay was our busiest day, with the big kids starting classes with a home school group. J is doing art and Spanish, and Em is doing drama and a sport class. Drama doesn't start until next week but all the other classes were wonderful. Em wants to do art now, but I said she would have to choose that next term if she was still keen. J had tennis and we went shopping, and did school work. Like I said a nice quiet week, after a crazy couple of weeks.
May the quiet continue for a long time!
Tuesday, March 1, 2011
Clinic went really well! Miss El has put on an amazing 700g in two weeks. It really does seem like IV's were the right thing to do for her at this time. Yesterday she didn't cough, except after physio and they were little dry coughs!!! So friday will be our last day. Then the removal of her PICC. Apparently the worst thing is taking the tape off of her arm. I think I will take her into the hospital for that. She already hates going in there and I don't really want her to be upset like that at home.
The older two are setlling back into home. I realised that I did not miss their bickering at all! I missed them and their playing and chatting but I sure wish all their little fighting was gone! We haven't started school work yet. Hopefully today or tomorrow. They did a lot when they were at Grandma's so they are not behind at all. Besides its a really long term so there is plenty of time to get everything done.
The older two are setlling back into home. I realised that I did not miss their bickering at all! I missed them and their playing and chatting but I sure wish all their little fighting was gone! We haven't started school work yet. Hopefully today or tomorrow. They did a lot when they were at Grandma's so they are not behind at all. Besides its a really long term so there is plenty of time to get everything done.
Monday, February 28, 2011
Hospital in the home was going great until her Miss El's arm became swollen red and sore. However, after spending the day in the hospital we decided that the actual PICC line was ok. SO home we came. It seems like her medicine is going through ok. Hopefully the line will be good until she is finished this course of IV's.
Today we are off to clinic to get the results of her annual review and make sure her cough is getting better, which it seems to be. Thankfully. SO the big kids are off to a friends and El and I are off to clinic. Please everything go well, Please.
Today we are off to clinic to get the results of her annual review and make sure her cough is getting better, which it seems to be. Thankfully. SO the big kids are off to a friends and El and I are off to clinic. Please everything go well, Please.
Friday, February 25, 2011
well it has been a crazy couple of weeks.
cf annual review
El lost weight about 300g since November. Not the best start to clinic. They decided to change her antibiotics to two different ones. And booked her in to see physio on Friday. Took an x-ray and talked to all the different team members nothing ground breaking to be sure.
Physio appointment
So I took her and the other kids in on Friday to physio planning to have her apt. and then planned to meet some friends at the cultural centre which had just reopened after the flood. But the physio said she wanted to speak to the nurse who wanted us to see the doctore who wanted us to be admitted because she had a chest infection! I had no idea she was so sick!! I mean she wasn't 100% but hasn't been for ages. We were admitted Friday afternoon and were in till Wednesday night.
On Tuesday she had a PICC line put in, (after going through a cannula every day). They also took a sample from deeper down then with a cough swab as her cough swabs have all been negative. I guess I will find out on Monday (when we go back to clinic) if she has grown anything. I was quite nervous for the surgery but she recovered very quickly and the PICC is much better, then the little peripheral lines. Now we are home and a nurse is coming out every day to change her antibiotics and check the line. The physio comes twice a day. It is great to be home. The responsibility is quite weighty for me, but the nurse and physio were great yesterday.
The little baxter pump is amazing, its like a baby's bottle with a balloon inside that drips over 24 hours. I would love to know exactly how it works! Also to thank whoever designed it!
J and Em have been at Grandma's since the weekend, so I am missing them but also enjoying the break from everything. I had a crisis last night because J asked if El would be in hospital for the whole two weeks because he was having a great time and didn't want to come home early. I am glad he is having a fabulous time (yesterday they went swimming and helped make a bonfire, I can't really compete with that!), but part of me wishes they wanted to come home! I am not sure when we will get them home I am just seeing how it all goes for a few days first.
cf annual review
El lost weight about 300g since November. Not the best start to clinic. They decided to change her antibiotics to two different ones. And booked her in to see physio on Friday. Took an x-ray and talked to all the different team members nothing ground breaking to be sure.
Physio appointment
So I took her and the other kids in on Friday to physio planning to have her apt. and then planned to meet some friends at the cultural centre which had just reopened after the flood. But the physio said she wanted to speak to the nurse who wanted us to see the doctore who wanted us to be admitted because she had a chest infection! I had no idea she was so sick!! I mean she wasn't 100% but hasn't been for ages. We were admitted Friday afternoon and were in till Wednesday night.
On Tuesday she had a PICC line put in, (after going through a cannula every day). They also took a sample from deeper down then with a cough swab as her cough swabs have all been negative. I guess I will find out on Monday (when we go back to clinic) if she has grown anything. I was quite nervous for the surgery but she recovered very quickly and the PICC is much better, then the little peripheral lines. Now we are home and a nurse is coming out every day to change her antibiotics and check the line. The physio comes twice a day. It is great to be home. The responsibility is quite weighty for me, but the nurse and physio were great yesterday.
The little baxter pump is amazing, its like a baby's bottle with a balloon inside that drips over 24 hours. I would love to know exactly how it works! Also to thank whoever designed it!
J and Em have been at Grandma's since the weekend, so I am missing them but also enjoying the break from everything. I had a crisis last night because J asked if El would be in hospital for the whole two weeks because he was having a great time and didn't want to come home early. I am glad he is having a fabulous time (yesterday they went swimming and helped make a bonfire, I can't really compete with that!), but part of me wishes they wanted to come home! I am not sure when we will get them home I am just seeing how it all goes for a few days first.
Sunday, February 13, 2011
It's tomorrow!!! Her annual review is tomorrow. Now I'm panicking. I really don't like going there. I know I don't have a choice, but I still don't want to go! Miss El coughed so badly last night that I thought she was going to be sick. Thankfully she wasn't. Maybe this cough has to get worse before it gets better?
I'm not coping too well today, but in a little over 24hours it will all be over. Until next year.
I'm not coping too well today, but in a little over 24hours it will all be over. Until next year.
Friday, February 11, 2011
Countdown to Annual Review 3 days!!
Yes I am starting to panic now. I keep going over everything they might say and ask and trying to figure it all out. Then I go off on rediculous tangents, which don't even make sense! So I am trying not to think about it, which isn't working at all.
I am really concerned about her cough, which doesn't seem to want to go away. physio doesn't really seem to help, and the antibiotics for her ear (Ialex) certainly isn't doing anything for her cough. Not that I thought it would, it was just a secret (not-so-secret now) hope, that it would magically get rid of her cough at the same time it helped with her ear infection.
I had an excellent time at Wicked last night! It is a fantastic show and now I just want to go again! Not going to happen but it was great!!!
Did I mention its 3 day until her annual review?
Yes I am starting to panic now. I keep going over everything they might say and ask and trying to figure it all out. Then I go off on rediculous tangents, which don't even make sense! So I am trying not to think about it, which isn't working at all.
I am really concerned about her cough, which doesn't seem to want to go away. physio doesn't really seem to help, and the antibiotics for her ear (Ialex) certainly isn't doing anything for her cough. Not that I thought it would, it was just a secret (not-so-secret now) hope, that it would magically get rid of her cough at the same time it helped with her ear infection.
I had an excellent time at Wicked last night! It is a fantastic show and now I just want to go again! Not going to happen but it was great!!!
Did I mention its 3 day until her annual review?
Wednesday, February 9, 2011
passed inspection yeah
going to see Wicked tomorrow double yeah
Feeling exhausted and hope I am not getting what the girls have had because that could potentially spoil the above. Its probably just from all the cleaning and panicking about the inspection that I am tired (she types optimistically).
El coughed up her breakfast this morning and has a lovely green snotty nose and an awful cough as well which is just lovely! Em seems to be feeling a bit better today after her 3 hour nap yesterday.
Tennis was cancelled because of the rain and I accidently left my toddler locked in the car in the garage for 10 minutes as well. I feel awful, even though she was fine. It happened because I did things differently then I usually do. It shows how easily accidents can happen, thankfully it was a cool day. So I am grateful that yesterday is finished and that today is a new day with no mistakes in it yet (thanks Anne with an E for that quote)!
going to see Wicked tomorrow double yeah
Feeling exhausted and hope I am not getting what the girls have had because that could potentially spoil the above. Its probably just from all the cleaning and panicking about the inspection that I am tired (she types optimistically).
El coughed up her breakfast this morning and has a lovely green snotty nose and an awful cough as well which is just lovely! Em seems to be feeling a bit better today after her 3 hour nap yesterday.
Tennis was cancelled because of the rain and I accidently left my toddler locked in the car in the garage for 10 minutes as well. I feel awful, even though she was fine. It happened because I did things differently then I usually do. It shows how easily accidents can happen, thankfully it was a cool day. So I am grateful that yesterday is finished and that today is a new day with no mistakes in it yet (thanks Anne with an E for that quote)!
Tuesday, February 8, 2011
Busy Month
Yes it has been a busy month and I haven't felt much like writing. So for a quick update.
The weather is still crazy in Aus, floods, cyclones and bushfires! What next? I guess we will find out. Ourselves we have been lucky. Nothing worse then a huge branch falling off our gum tree, and no icecream at Macdonalds when we took the kids one day. So we can't complain really.
Most of the kids activities have started up again now. With J doing tennis, swimming, and guitar, and next month will do Art and Spanish with a home school group! We have started school work and his reading has improved so much, he still has battles with writing getting letters around the wrong way, but its not as bad as it once was.
Em is growing up way too fast and is doing dance and swimming at the moment, then will start drama and sport with the Home School group next month. Her reading is coming along very quickly, and I am thinking of ways to expand her, rather then let her get too far ahead of her age. She had a trip to oral health in January and he is very pleased with everything. Em was disappointed that she didn't get a new toothbrush like last time, so I bought her one at the shops after. It will be a whole year before we go back and I am a little concerned that they didn't give her teeth a good clean. She is 5 now and I thought they would start doing that. SO now I am wondering if I need to get that done at our dentist or wait until she goes back and see what they say then?
Miss El turned 2 on the weekend, which marks a lot of things. 2 years with CF for our whole family. 2 years of physio, meds, and panic at any cough. 2 years of joy watching her grow and learn! Its been a massive 2 years. It also marks her 2nd annual review on Monday (yuck), which I am not looking forward to.
She still has a cough, which has become worse since Friday when she seemed to get a cold. I took her to the GP yesterday because she was off her food, tired and had a temp. Her chest was clear but it turns out she has an ear infection. Poor kid, really nice birthday present! It doesn't explain why her cough is so horrible and has lasted so long. She had a cough swab done 2 weeks ago, but they didn't call to say she had grown anything. Maybe they will have some answers on Monday? I doubt it, and she probably won't cough while we are there! I am getting sick of the cough though, just not knowing what it is is driving me crazy!
We have a house inspection today, so have spent yesterday and this morning cleaning and tidying. Hopefully we will pass as I'm not in the mood for having someone tell me my house is disgusting!
ITs raining again! Like we need more rain!!! Send it to Perth!
The weather is still crazy in Aus, floods, cyclones and bushfires! What next? I guess we will find out. Ourselves we have been lucky. Nothing worse then a huge branch falling off our gum tree, and no icecream at Macdonalds when we took the kids one day. So we can't complain really.
Most of the kids activities have started up again now. With J doing tennis, swimming, and guitar, and next month will do Art and Spanish with a home school group! We have started school work and his reading has improved so much, he still has battles with writing getting letters around the wrong way, but its not as bad as it once was.
Em is growing up way too fast and is doing dance and swimming at the moment, then will start drama and sport with the Home School group next month. Her reading is coming along very quickly, and I am thinking of ways to expand her, rather then let her get too far ahead of her age. She had a trip to oral health in January and he is very pleased with everything. Em was disappointed that she didn't get a new toothbrush like last time, so I bought her one at the shops after. It will be a whole year before we go back and I am a little concerned that they didn't give her teeth a good clean. She is 5 now and I thought they would start doing that. SO now I am wondering if I need to get that done at our dentist or wait until she goes back and see what they say then?
Miss El turned 2 on the weekend, which marks a lot of things. 2 years with CF for our whole family. 2 years of physio, meds, and panic at any cough. 2 years of joy watching her grow and learn! Its been a massive 2 years. It also marks her 2nd annual review on Monday (yuck), which I am not looking forward to.
She still has a cough, which has become worse since Friday when she seemed to get a cold. I took her to the GP yesterday because she was off her food, tired and had a temp. Her chest was clear but it turns out she has an ear infection. Poor kid, really nice birthday present! It doesn't explain why her cough is so horrible and has lasted so long. She had a cough swab done 2 weeks ago, but they didn't call to say she had grown anything. Maybe they will have some answers on Monday? I doubt it, and she probably won't cough while we are there! I am getting sick of the cough though, just not knowing what it is is driving me crazy!
We have a house inspection today, so have spent yesterday and this morning cleaning and tidying. Hopefully we will pass as I'm not in the mood for having someone tell me my house is disgusting!
ITs raining again! Like we need more rain!!! Send it to Perth!
Wednesday, January 12, 2011
My thoughts are not straying far from those of my fellow queenslanders who are being affected by the floods. 75% of the state has been declared a disaster zone, that is huge.
I had the most crazy shopping experience yesterday, when I went to do my weekly shop, I found that almost all the trolleys were being used, there was no bread, no eggs, no water, no baked beans or spaghetti (which is ok as I don't like bb or spag) and have of the suburb was actually in the shops!! It took 45 minutes to get through the checkout. It was more crazy then christmas. My plan is too lay low for the next little while, which is what the powers that be have asked us to do. It amazes me that people are allowed to live where flood levels have risen to previously and then say that they are shocked that the river is in their houses. My hearts are still breaking for them as they are set to lose everything, which is beyond my comprehension.
Miss El is still coughing, although nowhere near as often as 10 days ago. She has her annual review next month which I'm starting to get anxious about. I hate CF.
J went to the dentist on Saturday, and has no fillings!! But he needs to stop sucking his thumb! I have only seen him once since then, so hopefully it won't be too hard a habit to break! We had lots of plans for the holidays but much has been put on hold for the weather. Rain rain go away. At least it is sunny this morning, I even have washing on the line (SHHH!).
Miss Em has her annual appointment with her orthadontist next week. So I am furiously flossing and brushing her teeth, which I do fairly regularly most of the time, but get alittle panicked about this close to her appointment. She is quite looking forward to it, because last year she received a new sparkly pink toothbrush. Please let it be the same this year!!!
Prayers for all the flood victims!
I had the most crazy shopping experience yesterday, when I went to do my weekly shop, I found that almost all the trolleys were being used, there was no bread, no eggs, no water, no baked beans or spaghetti (which is ok as I don't like bb or spag) and have of the suburb was actually in the shops!! It took 45 minutes to get through the checkout. It was more crazy then christmas. My plan is too lay low for the next little while, which is what the powers that be have asked us to do. It amazes me that people are allowed to live where flood levels have risen to previously and then say that they are shocked that the river is in their houses. My hearts are still breaking for them as they are set to lose everything, which is beyond my comprehension.
Miss El is still coughing, although nowhere near as often as 10 days ago. She has her annual review next month which I'm starting to get anxious about. I hate CF.
J went to the dentist on Saturday, and has no fillings!! But he needs to stop sucking his thumb! I have only seen him once since then, so hopefully it won't be too hard a habit to break! We had lots of plans for the holidays but much has been put on hold for the weather. Rain rain go away. At least it is sunny this morning, I even have washing on the line (SHHH!).
Miss Em has her annual appointment with her orthadontist next week. So I am furiously flossing and brushing her teeth, which I do fairly regularly most of the time, but get alittle panicked about this close to her appointment. She is quite looking forward to it, because last year she received a new sparkly pink toothbrush. Please let it be the same this year!!!
Prayers for all the flood victims!
Tuesday, January 4, 2011
Miss El's cough has become worse so we have started anti biotics. More antibiotics! Hopefully this will clear it up.
We are having a great time with Mr A on holidays this week. The house is an absolute pigsty but we have decided to ignore it until tomorrow! Then we will probably ignore it til the next day!!
I really need to decide what to do for school registration this year. It is only a few weeks until we are meant to start, and I have nothing planned, no books, nothing to start with. I sometimes wish I could let someone else decide! But then I could just send them to school really couldn't I?
We are having a great time with Mr A on holidays this week. The house is an absolute pigsty but we have decided to ignore it until tomorrow! Then we will probably ignore it til the next day!!
I really need to decide what to do for school registration this year. It is only a few weeks until we are meant to start, and I have nothing planned, no books, nothing to start with. I sometimes wish I could let someone else decide! But then I could just send them to school really couldn't I?
Sunday, January 2, 2011
cough, cough, cough. The sound constantly in our house at the moment. Interrupting sleep. Never before have I felt that there should be something more that we can do to help. Physio twice a day against this dreadful disease seems woeful. It makes you feel powerless to watch as cough after cough after vomit after cough attacks the tiny body of your child. What more can we do?
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