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!