We have arrived home safely after our christmas holiday was cut short due to the horrible floods, which explains why I haven't posted for ages. Prayers for all those affected by the floods! It is going to take months for everything to be cleaned up let alone the crops that have been damaged.

We had a great christmas despite the weather. Everyone got lots of presents, I would even suggest that the kids have gotten to many, but I'm not sure they would agree!!! A big clean out of all toyboxes is planned! Look out lifeline we are coming with lots of 2nd hand stuff!

J managed to catch his first fish, a small bream! the look on his face was amazing, he wouldn't touch the fish though! He unfortunately ended up with some mozzie bites, which made him swell up(each bite the size of the palm of my hand) and itch and cost us a fortune at the chemist, but they are looking much better now! Needless to say he wore repellent everywhere we went after that!

Em has been enjoying her new scooter so much until she refused to wear a helmet and had it confiscated for a week. I think she will be quite the little chef when she grows up after helping me make the most amazing guacomole, although she wouldn't taste it!

Miss El has us concerned again. She started with temperatures which lasted three days, a cough (mostly dry) and even had a day of a rash, which faded everytime I decided to take her to a doctore. After that she was fine for a few days apart from a cough that ranged from dry to moist. Then she started with a temperature again for two days and her cough is quite moist now. Mr A has a cold so maybe she just has that. Surely she shouldn't keep getting temperatures? No one else has had temperatures!

Good bye 2010!

All Ok

I took Miss El to clinic yesterday. She has put on a huge 500g in 1 month! The physio suggested we change her physio around, to 2X PEP mask, then 1 position of pats then repeat 4 times and finish with her mask. This will help move all the gunk out better! They are happy for her to complete the antibiotics she is on. They also took a cough swab, which will be back next Monday - yuck hate waiting for these!

After her appointment being crazy like I am we went into the museum, had a great time and came home exhausted. Then last night I saw Harrry Potter!!!!!!!! So good, I wish that part 2 was out now too!

Loving the holidays, although we haven't put up our tree yet. Hopefully, tonight!!

Holidays and Coughs!

To go in or to not that is the question? Do I take my little cougher in to clinic today? She started antibiotics on Friday but her cough still sounds really awful. She almost coughed up her milk this morning, but was able with much furious swallowing to keep it down. I don't know that they will do anything other then take a cough swab. Maybe I will talk to the nurse and see what she suggests. I really want this completely sorted before christmas, and we go away. Away from a good children's hospital.

We are on holidays!!!! I still haven't decided where to register J, but next year seems blissfully far away!! Loving not having to think about getting school work done!!

The sun is shining (sort of) for the first time in at least a week, so if we don't go to clinic we might go for a nice walk, we even have new playground equipment in our park to check out, if council has removed the orange barrier!

Loving the hols!!!

Phoned clinic, we just have to keep an eye on her cough for a few days. She is still coughing and the worst seems to be at about 4am, and also when she wakes from her nap. Probably from the inactivity! Trying to decide if we should go swimming today. It seems like it will be quite a warm day and I don't think it would make her cough any worse? I will see how she goes today and decide at lunch time.

Nothing exciting happening today unless you count grocery shopping!

Bring on the holidays

We should finish school work tomorrow!! I am so looking forward to not having to do school work which in a way is making it harder to settle in and just finish. I am going to talk to a couple of schools about registering J next year, I am a little concerned about being illegal at the moment, so would really like to register. THe problem being that I like the way we do things and i don't want to change but if I register I will have to do things their way. Oh the confusion!!

Miss El's cough has become worse over the weekend and she now has a snotty nose as well. So I'm going to phone clinic later and see what they say. Hopefully, we can just keep an eye on her for a little while, fingers crossed. Miss Em has also had a snotty nose and has coughed a few times and J has coughed a little as well. Nowhere near as much as El though. She threw up after coughing yesterday again, really phlegmy cereal, I wonder if this is normal for CFer's?

Bring on another week, the end of schoolwork, the end of some after school activities, and the beginning of that crazy month of December!!!

NOOOO!!!

After 2 weeks of a dry cough, Miss El now has a full on cold. With cough (still dry thankfully), and sneezes (really nice yellow/green ones). Which she has also managed to share with her sister! The common cold brings a lot of fear with it in this household, knowing that you could be days away from a lung infection, antibiotics, hospitalisation. We are doing what we can, extra physio, which seems almost inadequte, but what else can you do?

On a positive note we are finishing school this week!!!!!! Tomorrow actually!!!!!! Which means we are free!!!!!!! We will be on holidays for at least 4 maybe 6 weeeks!!!! Yeeeeeeeeeeeeeeah!

Ups and Downs

UP - jamie oliver is starting his ministry of food in ipswich!
UP - had a great day in the city! Tiring but good
Down- Bel threw up after physio last night gross but seems fine today.
Up - a royal wedding is happening, can't wait to see the dress!
Up - Harry potter comes out tomorrow AND I was given a gold class ticket for my birthday
Down - can't see it until I have read the rest of the fifth book, and the whole of the sixth and seventh books and watched the 4th, 5th and 6th movies again
Down - Mr A worked last night and I am tired and lonely
Down - J's plane which he won in the city was broken by miss El this morning.

Life is full of ups and downs!

Prayers for Rachel and her mum Darcy as she has her bone graft surgery.

Masterchef cook a long

On Friday night junior masterchef had a cook a long. You get the ingredients, watch the show and cook a long! Well I thought 7.30 was a little late to start cooking with the kids, so we recorded it on HDD and then cooked it yesterday when little Miss El was asleep (we really didn't need her "Help"). It was a choc macadamia self saucing pudding with chantilly cream and caramelized orange sauce (it was meant to be hazelnut, but I don't like hazelnuts)! It was delicious and the kids had a great time making and eating it. Yum!! I hope they do another cook a long when the next series comes out!

In other news Em has a strange virus thing where she has been losing her voice for a few days. Now El is not herself, a little warm, and very clingy. so i wonder if she has the same thing. I guess only time will tell. Hopefully, her cough swab came back clear and no phone calls will come tomorrow.

Back to school tomorrow, and a fairly ordinary week. Except for Tuesday when we are venturing into the city to see the christmas windows and display at Myer and having lunch, with Auntie A and my Mum for my birthday. Here's hoping its nice weather and not too hot.

mid-term break

because of our crazy week I decided that we would take a week off of schoolwork! I borrowed the title mid-term break from an English blog I follow where they seem to have a break in the middle of every term(what a fantastic idea!).

It was a fantastic idea to take the week off with miss El's appointment, cleft pals morning tea, shopping for swimming stuff, PT, tennis, starting swimming lessons, catching up with friends, going to the library, the optometrist, and Friday activities. I just don't think we would have fit school work in! And it was a relief to not even think about it.

I am sure it will be hard to get stuck back in on Monday but for now I am enjoying the freedom!!

This week is cleft lip and palate awareness week in Queensland. We attended a morning tea and Miss Em got to see some abslutely gorgeous babies who looked just like her when she was a baby. Clefts are very common occuring 1 in every 600-700 births. I remember when we found out Miss Em had a cleft via ultrasound at about 20 weeks. My whole world stopped for days, I read the entire booklet they gave us at the hospital, and adjusted to life with a less then perfect baby. Five years on I look back and realise what a huge time that was in our lives, and thank everyone for their support: cleft pals qld, family and friends are at the top of the list. Handing your baby over for surgery is one of the most difficult things for any parent. So today I think of those people handing their babies over for surgery of any kind, but particularly clefts. Prayers please for Darcy who is handing 6yr old Rachel over for bone graft surgery next week.

Clinic

Well, Monday was clinic and yes we did survive, in fact everything was great! Miss El had put on enough weight had no cough, and no other issues! So we don't have to go back until February!! Which is wonderful. El still hated being weighed and measured and cough swabbed and having her chest listened too. She screamed for everything, and asked to go ("go car" and pulling our bag towards the door) after each person left! We waited for ages this time for everyone, I have a feeling they were quite busy.

Her appointment in February should be her annual review, which will be worse then Monday's appoinment, but I'm sure we will survive. So, hopefully there will be no phone calls next Monday (surely she couldn't grow anything too bad with no cough???? - wishful thinking). Then I can forget she has CF for a couple of months, apart from physio everyday, tablets with every meal, iron supplements, and my supersonic ears which hear dreadful coughs from miles away!!!

One Week

One week til miss El's apppointment. Its not really bothering me yet as I am quite focused on Miss Em's birthday. Our really quiet afternoon tea has grown to 12 or 14 kids plus adults! So that is a little stressful for me! I think the park sounds like a good option (if its not raining)!

I tried another of Jamie's recipes last night (well, really two recipes which i pick and chose from. IT all went really well until smart Mummy put the gravy and salad on the table and failed to sufficiently supervise one quiet quick little toddler. Hence our lovely salad was dressed with some gravy and didn't really go very well! Note to self do not put food on the table until I can supervise!!

Thank You Jamie Oliver

Yesterday I bought a Jamie Oliver book the first one I've ever bought as I usually just borrow them from the library. Its called Jamie's 30 minute meals, the sceptic in me was like, yeah whatever you reckon! So I chose a recipe and set to work and.... it really did take just over 30 minutes and probably would have been 30 if i had a garlic press. And it was delicious! Well I thought so. J didn't touch his potatoes or his spinach. Em and El loved the potatoes and tomatos. A loved the potatoes but not the spinach. The chicken was amazing but being as how no one else would touch it, I only did one breast and enjoyed it all myself ( apart from the one piece Laura took). So thanks Mr Oliver for a delicious dinner! I think I will buy a garlic press this week, I can still smell garlic on my hands!


Eight days now until El's appointment, not that I'm counting (lies all lies). We have a busy week with Miss Em's birthday, school work, tennis, dancing, practicing music, and all the other things we have to do!

Em's glasses have lost a little of their sparkle, she is not quite so keen to wear them but I am playing mean mummy and making her wear them!

The Countdown Begins

It's now under two weeks til Miss El's next clinic appointment, so I am starting to stress. Will she be fat enough? Will she grow any nasties? What will they say? How will I react? AHhhhhh, the list goes on and on. I know worrying will not change anything, not even a little, yet it doesn't stop me worrying. What will be will be. And I know that as parents, you just do what has to be done. Still the countdown is on, 11 days until clinic! Yuck!

Down One

One child less makes such a difference. Miss Em has gone to Grandma's for a few days. I miss her so much! But things are so much easier! I only have one child to buckle in a car seat, two children to get clean, one less floss and teeth brushing twice a day! There is a lot less bickering and fighting too. which is actually a relief! Not sure how Miss Em is going at Grandma's house as I haven't heard yet.

Please keep these people in your prayers:
Connor's family
Rachel who is having a bone graft next month
Mother's and Father's of CFer's as they find that balance for their children.

glasses

So upset that my little Miss Em is getting glasses. I knew it was coming but part of me hoped she could avoid it. But it really is painful watching her looking at things and the way she has to squint. So not only will my little girl have braces, operations but glasses as well. Not sure why I am so upset. I guess I should be happy that we have everything we need to help her to achieve her potential. According to the optometrist she is very bright, something we have known for a long time. Love her so muchd! She chose the pinkest of pink glasses, which will go perfectly with the dress I have bought for her birthday!

Things I like

Things I Like
1. Video Workouts: Check out the video of this workout. It sure is a killer, but it is much nicer using a video then a typed sheet of paper with instructions (my usual)
http://theabsexpert.com/blog/full-body-fat-burning-workout/. I actually haven't tried this one yet, its the next one I'll do, I did the interval abs one at the same blog. Give it a go! I couldn't move for 2 mins. after the 3rd set, and that was after modifying the exercises so they were easier! I am no fitness poster girl that's for sure!

2. Icecream: My favourite is cadbury's vanilla, not the light one either.

3. Sunny Days: Which have been few and far between, today is sunny, but there is an icy breeze blowing!

4. Books by Lori Wick: So wonderful you don't want to put them down. My favourite is, I think, To Know Her By Name. Its been ages since I've read it as I usually borrow them from the library and the library doesn't have many. I also recently borrowed White Chocolate Moments, which was great!

5. A Clean House: Although this doesn't happen very often!

6. My family, who are my support system through this crazy life.

7. Good friends, the ones who you can tell anything too and they don't judge you.

8. Ice Hockey Goalies, one in particular who is known as super goalie (I know you read this!!)

9. Blogs/ forums - the only way for CF parents to really keep in touch with the reality of living with this horrible disease and to get the support we need.

10. Days at home - the ones where you don't need to get dressed, or get in the car, or get school work done, or get house work done, or do the washing. the really lazy ones!

Rain!

I never thought a few short years ago that I would be complaining about too much rain!! But please can the rain stop now? I am particularly worried because our house has a leak! It only happens when the rain is heavy and today is the heaviest rain we have had. I emailed the real estate about it but have heard nothing! Except that we have an inspection next Tuesday and our rent is going up by $10 if we sign our new lease. Yuck!!

All the kids are doing well, the older two are loving our christmas unit! I even found a gingerbread house to decorate and put together. Should be a lot of fun, although I've never made sugar syrup before. Good luck.

The rain is stopping all of our outdoor pursuits at this time, so the kids are a little restless, may consider a walk around the shops if I feel like driving in this weather!

Rain rain go away little people want to play!

Mysterious Temperatures

The first time El had a low grade fever I didn't think much of it, i just thought it was her body fighting off one of those strange viruses that come and go. The second time I thought the same thing but now that it is happening every week to ten days I am concerned. She is the only one who has a temperature, and it is occuring fairly regularly. It doesn't seem to affect her behaviour, in that she still eats, drinks and plays. So I think I will have to phone the clinic at some point and have a chat. I hope it is just something that I am paranoid about. I really don't remember it happening with the older two kids, just random temperatures?? But then it is incredible how much you actually forget as time passes!

We are back at school, and loving our christmas unit! I know it is really early but I left it a bit late last year and we didn't cover much. Yesterday we read a Syrian christmas story and looked up Syria on our map and drew their flag in our christmas paper wrapped books. Today (time permitting) we will learn about camels, fascinating creatures! It is incredible how much you learn when you are teaching!

Choose Your Battles

I hate to say that my lovely 1 year old who didn't complain about taking enzymes, doing treatments (except for her mask, which she has always hated), getting her nappy changed or anything much really has turned into a monster!

She hates taking enzymes, hates being still for anything, thinks she is one of the big kids who can do what they can do!

I don't remember how tired battling all day makes me. I think it is probably worse for El because of her CF, and the things that she has to do, every day, multiple times a day! It also makes my interactions with the older two more intense as I have already battled so much with El.

So my motto for the day is choose your battles very carefully, because there will be many battles, the war is very looooooooog.

Please

Please take notice. Exercise is really important. Not just for your heart, your weight, your mind. But your mobility too. If you don't use it you lose it. It is easy to be complacent about the way you feel in your 20's but after witnessing a lady, in her 60's who hasn't kept her fitness up she is really restricted in her movements so I encourage everyone, to do something, anything. Everyday to keep your flexibility, range of movement and your ability to recover from injury. I know it is hard and I am hardly the poster person for doing something everyday, but I am trying. So that is my important information for the day.

Everyone, is doing well here. had a good time away. Enjoyed our week off and looking forward to our next one before back to school. El has a slight dry cough which I am trying to ignore and not stress about. I also realised that because her vitamin dosage has doubled we will run out before our next hospital visit so have to make a special trip in for her vitamins, grrr.

Next weekend we are going to a concert at QPAC which i'm really looking forward too!!

rain rain go away

Ok I know we need rain, in fact it wasn't that long ago that we were begging for rain! But why all week, the week we have no school work at the time of year when it is perfect for parks before it gets too hot? Also the week I am so far behind on washing, well actually I am generally always behind on the washing! So, scrap that!

Thankfully no phone calls yesterday, none at all in fact. I was a little lonely, with no adult conversation till 9pm when mr a got home from work! And then pretty much fell into bed and snored!

J is going to his friends birthday party today, so it will be strange without him around. May take the girls out, may not. Not really inspired to do anything. Hoping my Sis in law has her baby soon(was due yesterday). So I can officially be an auntie for the first time!!

Hoping the sun comes back next week.

No phone calls please

We have had a very quiet weekend. This week will make up for that I am sure! Although its the holidays there is still a lot to do. We are going away for part of the hols too.

Today is Monday 1 week after El's clinic appointment so if she grew any nasties today is the day we will find out. Seeing as how she is so well (apart from the fact that she just fell off a chair and bumped her nose) I told myself not to be worried, but last night that stopped working! I spent half the night working out how to organise the older two if she had to go into hospital, and the other half wondering how I would react to the phone call. A bit ridiculous I know. Especially considering we have never had a phone call before, she is not coughing at all, etc.. etc... etc!!

So my plans for distraction are shopping for a present for J's friend's birthday, and there my list runs out. I guess I'll have to work on my distraction list a little. Hopefully, tomorrow I will have nothing to blog about!

Holidays!

Holidays are upon us!!! No more school for two weeks!! And I have even planned next terms work!!

El's appointment went really well! Apart from the fact that she screamed everytime someone touched her!! She has gained weight, grown, chest is clear,tummy is fine. Increased her vitamin from 1/2 a capsule to a whole one! The biggest news is we don't have to do pats anymore, while she is well anyway! So just her PEP mask, which she contines to scream for, but that saves me 16 mins a day! We don't go back until November. November will see us at the hospital a few times, for cf clinic, Em's speeech assessment, and plastic surgery visit. So hopefully no awful phone calls next week!

Nothing much else going on, just normal stuff. And did I mention we are looking forward to our two weeks with no schoolwork?

Countdown

Well the countdown has begun. 4 days until clinic, then 7 days of dreading a phone call. I have to take the two big kids to clinic this time as well - because all my usual babysitters are out of action. Oh well, they will survive, but will I?

El has finished her antibiotics as of yesterday!!!! She is not coughing, but she is still not eating much. Mainly really small amounts of stuff, which makes it very hard to give the right number of enzymes. Hopefully she will be heavy enough.

School is going really well at the moment. We have pretty much finished for the term and are mainly practicing for our once a year concert/awards ceremony for the grandparents. That is assuming they can make it!!

Hopefully in the next two weeks I will be an Auntie for the first time!!!!! So excited. We are so buying him or her a noisy toy for christmas!!!

The weather here has been absolutely beautiful. Spring is my favourite time of year!! I love the cool nights and the warm days (it was 28 degrees yesterday). El went out in shorts!

Going shopping this morning which I don't like - but has to be done. No bread, no milk, no anything really. So it has to be done. Then tennis. So not sure if we will get school done today but here's hoping.

A Weighty issue

Ever since little El joined us in the world 18 months ago I have done practically no exercise. So I am currently planning just how to do some exercise. A gym is out I would never get there, walking is not really exercise with three little ones in tow. Can't really rely on Mr A to watch the kids as his work hours are too unpredictable. Meanwhile I get fatter, my heart with its dodgy valve works harder, and I feel miserable!

So we are thinking of getting a treadmill. So that instead of sitting down watching tv in the evenings I can walk and watch tv! Problems with this 1. the cost (which I think can be overcome). 2. little fingers don't really mix with treadmills very well. So walking has to be done when miss El is asleep or we need some sort of fence around it - which I'm not sure is possile? and 3 If the treadmill is right there will I actually use it or just look at it while I watch tv? I know I will use it at first but what about in 6 months or a year? Anyway I guess I will find out - if we get one!


Miss El has had a mysterious temperature for 48 hours now. Not really sure what is going on. She is very clingy though. It shouldn't be anything too bad as she is still on antibiotics. Hopefully it will just disappear and be a distant memory. Clinic is two weeks away and her appetitie has dropped again so will have to see how that goes.

J for the first time is loving reading himself!! It is so exciting. He said he would rather wait in the car and read his book then come with us - until he discovered we were at toyworld!!

I spent some time with just Em yesterday which was wonderful, being the middle child can be difficult. ( I should know!! ) I am quite worried about her, she is very withdrawn at the moment. I am making an effort to spend a little extra time with her and tell her often that I love her. But a little lost as to the cause of her closed in nature.

Excited to be going skating this afternoon!!! My favourite thing to do.

Contemplating

I could not sleep last night for the silliest reason. I suddenly had this fear that if there was a fire J wouldn't know what to do! He is at the other end of the house to us and I guess i was just panicking. Anyway, I came up with a plan, we are going to have fire escape practice for him. Ok problem solved! Well that problem was solved, then I heard creaking which I thought was the huge gum tree outside our bedroom about to fall on us! It turned out to be just slight rain on the tin roof! Ok problem solved.

Then Miss El woke up and came for a cuddle and I started thinking how unfair it all is. For this little girl to have such a horrible mistake in her genetic make up. Then I remembered reading a verse that says God created me and knit me together in my mother's womb (something like that a psalm I think). So then I was asking God why did he make her like this? He could have stopped it, or given her to someone else. But he didn't. So after my anger and my tears, was not feeling the best. Then checked a blog that I have been following for a while http://www.gavinowens.com/ They recently lost their 3 year old son to mitochondrial disease, and she wrote this:


Choosing to believe that God directs our life path takes a whole heck of a lot of pressure off of us as incredibly flawed humans.


So although El has CF, God is taking us on a journey, he sees everything. There must be some good that can come from all this. I'm not sure it makes it any easier to live through though.

So thanks to Gavin's Mum for making my head stop spinning this morning. Hopefully I will sleep better tonight!!

voting

Well went and voted in the federal election yesterday and woke up this morning expecting a result, only to find there isn't one and it could be a while before we have one! We may have a hung parliment for the first time since WW2. The youngest MP ever has also been elected, he is twenty. Just goes to show that being young doesn't mean you can't do whatever you want. I have never been so excited about an election before, not that I am thrilled now, but just more interested and understand the implications of the choices we make a little more. Must be getting old!! I also appreciate more the fact that we do have a choice, which is a wonderful gift in and of itself. Yep, its confirmed I am getting old!!

Things have been crazy around here! I am so looking forward to my quiet week this week! Catching up on housework. I have a confession to make, I was so exhausted last night i couldn't even face doing El's physio. Bad Mummy points just increased. Thankfully, she is not coughing at all so maybe it is not a bad thing to have a day off?

One more crazy day (today) and then back to normal for the rest of the week!!

crazy life

We have been extremely busy. One of the craziest weeks I can remember. Thankfully, next week is looking much more normal!

El has stopped coughing so no need to go in next week. She has 2 weeks and 3 days of antibiotics left and another week after that until her clinic appointment. So hopefully we will have a cough free household for a long time.

School work has been going ok. J got 100% in both his English and Math this week, yeah! we also made treasure maps, (which was really fun), went to the library (my apologies to anyone else wanting library books, we have borrowed all of the good ones!), went to three parks for plays (a necessary part of school work), and didn't do much book work at all. In fact we did 2 days of unschooling (definately not my usual thing). Next week we will have no excuses, so we will have to get more done.

I have been thinking about things a little too much. But would love to get my kids to a sunday school regularly, and me to church. But where to go? Would like it to be somewhere close, somewhere calm, somewhere with a solid foundation, with friendly people, and somewhere it doesn't matter if you don't go every week. I think maybe I am too picky and this is why I haven't been to church since easter. Maybe I should just go once to each one and see which one I like best? I don't know.

anyway going to stop rambling now and enjoy my crazy weekend!!

Clinic and stuff

Clinic went well. El's still coughing so was put on antibiotics for a month, although is she is still coughing after two they may do iv's. She grew staph last time, so I think this is why they are doing a month of orals. No worries about her weight, which is a little hard to understand after the fuss last time. If she has grown anything on her last swab (anything serious that is) they will phone on Monday afternoon with a new plan of attack. Well, she is still coughing although not as much as Monday. so lets hope she stops by Thursday, so I don't have to phone them.

J turned 7 this week. I was sat up on Tuesday night watching one born every minute, a documentary about a maternity hospital in the UK. Thinking oh my goodness this is exactly what i was doing seven years ago! A bit of an eerie feeling! He had a great day and a great party!! Thouroughly spoiled!

We finally got back to school work on Wednesday after a week off! It has been a bit tough getting back in, especially for J who finds it a bit of a struggle. Miss Em loves her book work and had been asking for about 4 days when we were going to start!! She has just started some really simple addition and has picked it up so quickly, a little scary considering she is not yet 5! If only I could get her to slow down and take a little more time for everything!

Well, another quite normal week ahead with nothing too exciting which is actually a good thing after two rather crazy weeks. Hopefully no phone call Monday and no cough by Thursday!

Sick

Well, we are sick again! It feels like we have been unwell for a very long time! This time Em was first, then the next day me and J and El. So El had about 4 or 5 days with no cough and is now coughing worse then ever. We have clinic tomorrow but can't leave the big kids anywhere with their germs so not sure what to do. Guess I will phone in the morning and see what they say. El really needs the appointment to get checked over so hopefully they will let us all come.

In the meantime, dosing up on the vitamin c and trying to spend time in the beautiful sunshine for some vitamin D!

Our school work has completely ground to a halt, understandably so. Hopefully will start again on Wednesday, even if it is the EKKA holiday and A is home.

J is so excited about his birthday! I hope he won't be disappointed with his two presents, especially the distinct lack of lego. He did get some birthday money last week from overseas so he can always buy his own. In six weeks, when the money is available. I can't believe it takes six weeks these days. they also charge $10 which takes an awful lot of a 20 pound cheque! Not a lot you can do though. And he thinks it is an absolute fortune anyway!

Well, hopefully miss El has put on enough weight to keep the doctors happy, and this flu is just a virus so we can avoid anti biotics! Off to do some more physio now!

orienteering

All three of the kids and I went to an introductory orienteering session yesterday! It was really fun, we did the short course, in a really looooong time. Well, we did have a 6 year old, a four year old (who I carried part way), a one year old and a buggy!! It also fit really well into our SOSE mapping for this term! They loved finding the controls (boxes with numbers and special paper punches to mark your cards with). If you ever get a chance to try it, have a go!

The ice creams on the way home were essential to the trip too, it was really hot yesterday (for the middle of winter)!

did you know?

Did you know that couples with a child with a chronic illness have a divorce rate of 75%? That is not good at all, the normal 50% divorce rate is high but 75% is a huge jump up. That means only 1 in 4 marriages survive. That is terrible, so my thoughts are now turning to what makes the difference, what makes it work and what causes the marriages to fall apart? I have no answers only questions. I do know this: I want to be one of the 1/4. So I suppose I have to find the answers and work at it.

Have you lost a tooth yet?

Have you lost some teeth? Little Em is starting to get asked this by people. No, I say, she has a cleft lip and palate and that is where the gap in her gumline is. It will be fixed when she is older. I guess i does look like she has lost some teeth. I don't think she will lose teeth for quite a while. Although J was only 5 1/2 when he lost teeth, that gives us at least a year for Em.

No phone call yesterday so I am feeling a little relieved, although part of me thinks they could still call today ... or tomorrow... or? Anyhow, El had a huge cough this morning and it didn't sound quite as moist. So heres hoping that the worst has gone.

Getting back into schoolwork was fine last week, but we are struggling a bit more this week. I think it comes back to my attitude to it all. The added stress of waiting for that phone call or not, has really affected my attitude to everything so I think today will be better. Loving learning about maps and space, as are the kids! Bring on the treasure map!!

references to clefts

I read a couple of books which have references to cleft lips. Harry Potter and the chamber of secrets, at the end, Prof Lockhart, says, " the witch who banished the bandon banshee had a hare lip. I mean, come on..."

I also read a book by Jeffery Archer, I think it was Kane and Abel, (great book!). I don't own this one so can't look up an exact quote but it was set in an immigration place in the USA and someone was turned back becuase they had a hare lip. I think it was set in about 1940. I was surprised that someone would have been denied entry because of a cleft. But I suppose it is a medical condition. I wonder if it is still something that would affect your ability to work in/ live in another country. I hope not!

El is still coughing like a trooper, even though she has been on antibiotics for 5 days. Will have to wait and see if we get a phone call on monday. Hope not. Have I mentioned that I hate waiting?

Mad

I read yesterday that it against the law in Australia for siblings (or anyone) to find out if they are a carrier of CF until they are 18. This makes me angry as I have been thinking about getting J and Em tested so that they and we know. So when they are teenagers you can start talking about the implications of that. I don't understand why you can't find out. What would the harm be? I also don't know if this is actually the truth as it was just something I read online so will have to check with the clinic.

Prayers today for Rebecca who is taking her two kids for their annual cf reviews. Clinic appointments are always stressful for me and then the week after waiting for phone calls of results is like torture! (which is where we are at the moment). I thought perhaps it would get better, but I don't think the fear of the unknown will ever go away.

CF Sucks!

back

I've been away for a week. glad to be home and not. getting back into school for term3. El's cough is much worse so she is on antibiotics, also trying nutrini drink twice a day to try and boost her weight. And got the creon 10000 so she doesn't have to take quite so many enzymes in a day. El sings songs and talks all day long now.

They are all happily building lego at the moment. J's birthday is three weeks away and all he wants is lego starwars. Last year it was all about transformers. Now he hardly ever mentions them, before that it was thomas and bob the builder. So grown up. Given his obsession with star wars at the moment it is quite surprising that he has never watched any of the movies! Only read the lego catalogue and some books!

Miss Em is gorgeous at the moment siniging and dancing through the house. Dressing up and changing clothes about a dozen times a day. The washing doesn't like it! But she is happy!

Well that was a whole blurb about absolutely nothing. just the mood i'm in I suppose! Happy days!

Not the dentist!!

I hate going to the dentist! Unfortunately, I make my kids go, which means I have to go too. I feel like a hypocrite telling J he will be fine, when I am so nervous. so am I actually lying to him? I don't think so I am just trying not to pass my fear on to him. We (J, A and I) see the dentist in two days and three hours. YUCK! Em has an optometrist appointment on the same day. Because unfortunately she has my eyesight. We did make a deal when we got married that our kids would have A's vision (20/20) and my nice straight teeth with no holes. But it has not worked out that way!

El's cough is a little worse, so just keeping a close eye on how she's going. Haven't phoned the clinic yet as I don't think they would do anything at this point. Even more worried about her food intake now as she is also coughing up a bit of food (tiny amount).

sick

Well all three of my lovlies have a cold of some description. Not good. Doesn't seem to bad so far. Of course I am worried about El, particularly because her appetite has really decreased over the last two weeks and has now, due to this cold and not being able to breathe through her nose, decreased even further. After only putting on 200g in 2 months I am more then a little concerned. There is not a lot I can do. You can't force feed anyone particularly a very determined 1 year old. Maybe that is what bothers me most the fact that I can't do anything!

We have also doubled her physio, to help shift the extra gunk. At least its the holidays so I don't have to fit in school work as well.

motherhood

I have always wondered why I have been given these three children or any children at all for that matter. I never asked for children. Don't get me wrong I love my kids and am grateful for the opportunity to raise them, but why me?

My friend once told me that God has specifically chosen my children for me, it had never occured to me before that for some reason God matched us up. So if this is true, which I believe it is, then I should have the skills and resources and everything I need to raise them. Why then do I feel out of my depth so much of the time? Maybe that is just a human thing, I don't know.

People say God never gives us more then we can handle, with his help. Strangely enough this helped me through Em's operations because if God knows I can handle this, then I can handle it. Sometimes I don't think I can handle the unpredictability of CF, but no one truly knows what tomorrow holds, so am I any different from anyone else? Maybe holding on to the promise that God never gives us more then we can handle is all anyone can do? Enjoy today and make the most of it, trusting that God knows us, and what we need, and what we can handle, and what our children need and can handle too.

Having a low couple of days. Plans being cancelled, El has a dry cough again, the weather is miserable wet and cold (can't get the washing dry). Not very fair for the winter holidays. The kids are loving watching too much tv and playing far too much DS. Although a little house bound. I never tell them plans until I am sure they will go ahead, so they don't get disappointed. But I am! Some adult conversation would be really nice. Anyway, hopefully our plans for today will go through.

We did go to the library and pick up some books yesterday, so at least I have something nice to read!

bone graft

Listened to a talk on the weekend by a mother of child with a cleft. She spoke of her apprehension before the bone graft surgery, which I think all of us cleft mother's have. She said that it wasn't as bad as they had been expecting. I sure hope that is the case for our little Em! I have dreaded that since I first heard about it. Also the fact that her other 3 surgeries were when she was a baby so I didn't have to explain them to her. It is a good thing she is a brave little girl. Lets be honest, her surgery is still at least five years away, but every so often it comes back to haunt you.

An oral health specialist spoke too. He said children with a cleft are up to 3 and a 1/2 times more likely to have holes in their teeth. Explaining you should brush all of your children's teeth twice a day until they are ten years old and floss them once a day. I am generally happy if I brush their teeth once a day. And I hate flossing, but I will try harder.

Now another thing he spoke of is diet and how much sugar affects the rate of cavities in teeth, now my question is, El is on a high fat, high calorie diet. Is this likely to increase her chances of holes in her teeth. What about the extra salt that she consumes will that increase the liklihood? I have no answers, perhaps I should have asked but didn't think it was appropriate to be asking about CF in a cleft meeting.

J asked yesterday if El's CF would ever go away, and I said no she would have it forever. He said, until she dies? and I said yes. A really difficult moment for me having to verbalise those very difficult facts. He hardly reacted at all. Kind of surprising to me.

Please keep Conner's family in your prayers as they prepare for his funeral.

Conner

I read this morning the post by Sarah, Conner's mother, about Conner's last 24 hours on earth. The tears poured down my face, as I squeezed my little CF'er close. What an incredible post about an amazing mother and father, doing their best for their eldest child. I pray that God holds them close at such a difficult time.

Please squeeze your loved ones close, forget about the small things that don't really matter, and thank God for all that you have that you don't realise you have.

Sad

My heart is filled with sadness today after learning of the death of little Conner. He was just 7 years old, the same age as my J. Loved lego the same as my J. I am glad he is no longer struggling to breathe or in pain. My prayers are for his parents, friends and family. CF is such a dreadful disease, so unfair. I have no more words today. Just sadness and prayers for his loved ones.

stuff and nonsense

Lots of different things:

1.So much going on! I can't believe that Rudd might not be prime minister in a couple of hours! I can't see how replacing him is going to make any difference?

2.I hate inspections! I realise that people need to check on the home we borrow (and make them rich in the process), but why every 12 weeks. It is good in a way because it means the house gets a really good clean every three months, but I hate it. I guess I could never be in the army with room inspections or whatever all the time!

3. Miss El's cough is much better (in fact almost non-existent!) So will continue with extra physio until the anti biotics are finished. Then go back to our more normal existence!

4. Cleft Pals AGM on Saturday! The girls and I will be going along! A will be taking J to work with him. I like to keep in touch with what is going on and the AGM is a good way to do this. Looking forward to going along.

Those are my ramblings for the day!

home school planning

Firstly off topic. Thank you Hamish and Andy for your Caravan of Courage, show on Thursday night! Haven't laughed so much in ages. You truly do some really stupid things which I love watching. I would never do them myself so thank you!

Back to the topic at hand. Planning. Now my approach to this is what shall we do this term. We have our math and English planned out for the future, because the worst thing I think you can do is swap all the time. But for science and SOSE, technology etc. I plan term by term depending on what interests my children (mostly J at this stage as Em is a bit young).

What I was shocked at last week when I was chatting to a bunch of mum's is how much planning some people do, as in, planning years ahead. Maybe I need to plan more? Sometimes I think I plan too much as they learn much more by themselves then with me, anyhow. It seems to me like our curriculum will always be evolving.

Nothing like an afternoon out to make you re-evaluate everything you do!!

babble

Well miss El's cough has not cleared up so she is on anti biotics, again. Hopefully this will do the trick.

I think as a home schooling Mum you have to make a conscious effort to make your kids not become too dependent on you. I find my kids expect me to do everything for them and they find it quite challenging to do things for themselves. Yes, I know they are young, but an almost five year old can wipe their own bottom, and an almost seven year old can make a sandwich!

I went skating on the weekend, on my own, and had the most fabulous time, but I did feel slightly guilty that I didn't take the bigger kids with me. Next time I will take them (maybe)!

We have a nice quiet day today, which is good, I really enjoy my quiet days at home.

prayers

Prayers today for all CFer's and their families. Fighting this disease or trying to live in its wake. Prayers particularly for:

- Connor and family who are facing the end of his time on earth

- Graycie who has been readmitted to hospital

- Piper who has just received new lungs

- all the Mum's and Dad's who keep track of physio, and meds, and pray prayers every day for their children.

- the doctors and nurses for wisdom to find the best treatment for each child in their own individual circumstances

- those who have lost loved ones to CF, that they may have strength to keep on keeping on, despite the pain

- Thanks to God that he is in control, and holds our children close to him.

Amen

busy

Well no phone calls which is a good thing. Although she is still coughing lots! We have been incredibly busy doing not much at all. It took me an hour to make banana smoothie this morning, first I realised we didn't have any milk, so took a quick trip to the shop, then I had to wash up the blender as it was unwashed from last time. Everything seems to be like this at the moment. Before you can.... you have to .... and ...... Feels a bit like being on a treadmill!

Had a great day yesterday, a BBQ with family out in the beautiful midday sun, the kids ran wild and came home filthy and exhausted! A perfect child hood day. This week should be a little calmer (I hope!).

clinic stuff

Well clinic went ok. She only put on 200g in two months, so there was a bit of concern over that. She is on the 25th centile for height and the 10th for weight. which doesn't seem too bad to me. So we have to try and give her extra calories when we can. They took an NPG and a cough swab, hence every time the phone rings I get a little anxious until I found out who it is, they probably wouldn't even have results yet anyway, I think it takes about 3 days. They decided no antibiotics for now, unless the cough gets worse. So it was actually quite uneventful, well apart from the screaming when they do anything to her, even just listen to her chest! But I'm guessing this is the worst age for that as you can't really explain what's going on, but they are very aware of the way they feel.

So glad clinic is over and we don't have to go for another 2 months! Wondering how I can get extra food into her, she seems to eat quite well. The dietician suggested adding toast to her breakfast and an extra dessert at lunch time, so we will see how that goes. I would gladly give her some of my extra fat!

No phone calls please!

Clinic

clinic today, so I am a little stressball. That's why I'm up before everyone else. That and El's coughing has kept me up during the night. Her cough has been much worse since Saturday night. Hopefully all will go well.

wishful thinking

Sometimes I wish I didn't have to explain CF to so many people, what her enzymes are, what her physio entails, is it serious, etc etc etc.... Some one who knows what its like, what it all means without having to start at the beginning. Have one entire conversation without CF being part of it. Being able to forget for just one hour, one day. Alas it is not to be.

Sometimes I wish my kids would do things without being asked three times! I guess that is not entirely fair because sometimes they do things the first time I ask (admittedly I almost die of shock).

Sometimes I wish I could spend every day at the beach or skating but I guess then I wouldn't appreciate the times I do go quite as much.

Sometimes I wish I could understand things better, so that I could explain them to my children better. Everyday things (how does the tv work?) and complicated things ( why does El have CF? How can God be everywhere?). I do my best to find answers for them and explain things but it is hard when you don't know the answers, and I do admit to them that I don't know, don't understand, because it is ok to not know. It is also frustrating particularly when they ask questions that you don't want to answer!

Sometimes I wish I was more open with people so that I could explain the way I really, truly felt about things. But it is so much easier to talk about mundane things.

Sometimes I wish I knew what the future held so I could plan ahead for it. But then I realise that it could be quite scary and dealing with one day at a time is probably easier and I am probably not ready to know yet what will happen.

Random Thoughts

I was thinking as I watched my kids playing in a playground, that the day would come when they wouldn't like to play in playgrounds anymore. The thought made me quite sad.

Miss El is coughing again, mainly during the night and in the mornings, at least her clinic appointment is Monday so I don't need to stress too much (at least until I am waiting for cough swab results)! Waiting is probably the worst, she hasn't really grown very much in the past only staph, haemophilus, and adenovirus, the last two landed her in hospital. But the potential is always there.

Just a quiet day today, school work and shopping, and all the other normal tasks completed in a day!

Happy Birthday

Happy birthday to the Man Of The House, we had a great day, pity it was raining so picnic plans had to be abandoned. Ice skating, was great and dinner out was wonderful. Birthdays have become so much more special since we found out El has Cf. Celebrate life any chance you get! I think I will try and get out on my rollerblades today!

65 Roses Day

Today is 65Roses day in Australia. Visit http://www.cysticfibrosis.org.au/qld/ to find out more about Cystic Fibrosis or to make a donation. They offer wonderful support to all of our family as we fight the battle against this disease.

Just Another Manic Wednesday!

I like Wednesday because we don't have time for school work, so does J!! I also don't like Wednesday because it is one of the few days we have to rush out the door. We have to go to the hospital for Em's speech ( I actually think it is her last appointment today), I try to go early and have a walk first, to wear off some energy, before sitting still for an hour. Then it is back in the car for the mad dash to tennis. At least it is on the same day. I prefer to have one crazy day then lots of little things all week!

The speech is so good for Em and she really enjoys it! What 4 year old doesn't love being the centre of attention! She is working on "sh" at the moment. Never before did I realise how much work it can take to make a sound, (especially with part of your mouth missing). The speechies are wonderful with her, and I hope she continues to enjoy her speech appointments as she gets older.

You Can't Leave

I found out today that one of El's CF nurses is leaving. I am devastated. First her dietician changed, then her OT changed and now one of her nurses, who is our first contact for everything CF. So at our next clinic in two weeks we will meet our new nurse. I dislike meeting new people, and nurses are such a big part of our CF life. Last year when we started our CF journey I thought the people we met at clinic would be there forever, which when I think back doesn't make sense, because even though I know they care and do a great job. It is still just a job for them.

Proud Of My Kids

Yesterday I was sick in bed, and in the evening Daddy took El with him to get some chips for dinner. Leaving J and Em here. They decided to tidy up, get plates and cups out for dinner and vacuum the floor, they even got El's enzymes ready. They did a fantastic job for a six and four year old. It made me feel so proud that they would do something like that all on thier own.

Hello

Hello. I am a mother with three wonderful children, who will be known as J, Em, El. I homeschool (Yes I am officially mad). Em was born with a cleft lip and palate, and El was diagnosed with Cystic Fibrosis at 2 weeks old. This blog is where I can chat about whatever I feel like.