cystic fibrosis- update

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.

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!

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!