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!

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!

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

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.

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!

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.

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.,

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.

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.

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