Friday, February 25, 2011

Photo Friday

A loud advocate for awareness of Cystic Fibrosis, research in the field, and organ donation
Despite a double-lung transplant, Eva’s body could not last.
She passed away on the morning of March 27, 2010.

Thursday, February 24, 2011


It scares me that Ruby isn't self-sufficient. Or that I can't provide for her without help.

It scares me that she would not survive without her medication.

What if we had a natural disaster and all of her meds were lost?

What if Ruby and I are kidnapped? She would cry and cry and starve. 

What if there was some kind of massive evacuation and they only took people with no medical problems?

What if we got lost in the bush? I can't even breastfeed her and deal with the consequences of not having her Creon. 

Very unreal circumstances I know, so why do I worry about it so much?

Pancreatic Insufficient is the technical term.

Wednesday, February 23, 2011

Interview with a Sister

Eliza and I had a conversation about CF and Ruby. She is a funny little kid! I find her memories of staying at the Ronald McDonald House quite suprising, seeing as at the time it was a real struggle for her. And the part about her Grandma's family, totally random! Good luck following this one...

What does Ruby have? CF. And what does CF stand for? That you never feel better. That what it means.What do we do for Ruby to make sure she doesn't get sick? Give her medicine before her feed.Anything else? Yes, I know how she got CF. Cos she was born with it and she never feels betterDo you remember what happened to Ruby when she was first born? She had to stay in hospital.
And where did we stay when she was in hospital? At the Old McDonald House. What did you think of staying there? It was really fun! I meeted lots of friends! Prue and Ava. Why did Ruby have to stay in hospital? So the doctors could fix her. And did they fix her? Yes. No. Yes What else do we have to do to keep Ruby healthy?  We feed her. Yes, that's true. What do we feed her? Milk. Mummy, why do we give her milk? Because thats what babies drink. I want to drink milk one day, all the time. Oh, and we give her anti-biodies and Pentavite. Lets talk about the Old McDonald House. Who else did I meet? You met lots of kids there. Yeah, cos they were sick. I meeted another girl who was a bit taller. She might be 4 or 5, I don't know how old she is. Did you really like staying there? Yep! I didn't like when mummy and daddy had to go to the hospital all the time. I liked when you went to get Rubys milk. I loved playing games with daddy everywhere.And did we get any visitors when we were there? Yeah, Aaliyah. That was fun, and Aunty Helen, and - oh, I think the girl that was a bit taller than me was 6! I'm not really sure, that was a long time ago. She said she was 8, no she said she was 9. Are you talking about someone who was staying at the house? Yep, she had a blue top and white pants. Ok then...what don't you like about Ruby having CF? I don't like her having lots of medicine. And I also don;t like her about going to the Old McDonald House. I thought you liked the Old McDonald House? I do, but I don't like her keep going back there. You mean for clinic visits? Yes. whats clinic? When the nurses and drs check her out. Yes. What about Prue? she had to stay longer! Yeah, she was still a bit sick at the time.  Did Prue lie in a cot too?No. What did she lie in? Probably a bed. She is a teenager. Was there anything fun about the hospital? No- oh there was a big TV with Dora the Explorer on it, that was good! Rubys room was boring. I wish we didnt stay at the Old McDonald House. I love my bedroom. 
Do all babies have CF? No. Kai doesn't. Ollie doesn't. Kelly's baby doesn't. Who else has CF? I don't know any other babies with CF. Oh! Grandma didn't have CF as a baby, but her daddy did. Her daddy name is Grandad Jimmy. And Grandma's uncle had CF when he was born. And he hardly got fixed quicker than Ruby! Really? I didn't know that. What's Team Ruby? Team Ruby...I don't know! Is daddy doing a big walk? Yeah, And why is he doing that? To fix CF! How's walking going to help CF?Walking doesn't fix CF silly! Cos we get money to help CF! Oh, what does the money do? Well, we give it to doctors- no, it's special money you get to put in your mouth and you help CF. It's not money, it's medicine but round like money. But babies don't have it, adults do. Cos you have to melt it in your mouth. Mummy I need to do a poo. Conversation closed.


Friday, February 4, 2011

Clinic Update Feb 2011

We left Eliza with nanny & pop today as she had a cough and I refuse to be one of those parents who take their kid to pre-school when they aren't well. Craig wasn't well either so he hung out at the cafeteria while Ruby and I went to clinic.

I always forget to prepare myself for the initial walk inside the hospital doors. It's like you enter another world. A world that exists purely on the fact that shitty things happen to kids. It sucks the breath out of me when I first walk in, but it only lasts for a second.

Because Ruby has had a bit of a runny nose, we were put in a room on our own, which was actually quite nice!

First stop, the weigh-in...and she weighed...6.595kg!  And she is 54.4cm long. Good work on both accounts.

Then the physio came to visit us. She is totally in love with Ruby and always insists on giving her big cuddles. Because Ruby is sitting up now, we can add some other aspects to her physio. Mainly bouncing her up and down and using an exercise ball. Physio for CF is fun for kids, as anything that pushes the air out quickly is good for their lungs. So bring on the trampolines and pogo sticks!

Next visit was from Ruby's respiratorist who looks after the overall care of Ruby. He gave her lungs the all clear and wrote of a script for more Creon. As I left, I noticed the script was made out to Ruby Creon so next time I'll be careful not to talk to him whilst he is writing!

Then we had a sputum sample taken. Tube down the throat, a bit of gagging, and it's all over. Hopefully nothing sneaky growing down there.

Last visit was from the dietitian, who came in with a huge smile on her face. She was very pleased with Ruby's weight gain and gave me the "gift" of letting me throw out the PolyJoule. (PolyJoule is powdered carbohydrate, when made up it is as sticky as superglue and I just hate it). We are still on a super dooper strength of formula though, until her weight catches up with her length a bit more. She asked me what I was doing with her solids, and she was very impressed with what I have been feeding Ruby.

And I felt really proud of myself. 

Choosing Ruby's food is the first time I have felt that I have total control over an aspect of her care. I can make my own decisions, my own informed choices. I chose to skip the goopy baby cereal and make a chia seed gel instead. I chose to add coconut oil to her foods instead of the normal lump of butter. I let Ruby decide that she was really for solids, and Ruby only. I may have failed at breastfeeding, but now I can choose what foods she is eating, and as I prepare it all myself, I know exactly what is going in her body. And, the best thing is, they were the right decisions, Ruby is doing really well.

For other CF mamas reading this, here are some questions we asked:
What is the "perfect" climate/environment for a CFer to live in?
"Your house". The doctors way of saying don't do anything drastic. He then said that coastal climates are best, due to the salty air and surf. Also, it is more important to have good health care close by, than the actual conditions of the environment.

Now that Ruby is 6 months, do we buy the next stage formula?

Dietitian informed us that there is no reason to change formulas, there really is no beneficial difference between them all. Discussed how formula companies are evil.

Time frame of giving Creon and continuing eating?
Creon 5000 lasts half an hour, so if still eating after half hour, give some more

Next visit in a months time!