Alana and Cystic Fibrosis

Lovely to hear from your Lara, I am glad that things are going well and that Alana had a great time at playgroup. Best of luck with the cast and I hope it does the trick.

SO glad Alana loved Playgroup, and hope the cast works quickly and she is up and running LOL, then she'll be in to everything LOL

Best wishes Michelle

Update!

Alana had the cast taken of today and well it seemd to have worked well on the right leg. Unfortunately the left leg, which wasn't casted, seems to be really tight now. The physio considered casting both of them, which would have been awful, but decided to go for these fibre glass type of boots instead. She only has to wear them at night when she is asleep, so heaps better.

They have also referred her onto the Paediatric Neuromuscular Clinic. They want to rule out anything like Cerebal Palsy. So her appointment is on the 23rd. They have a team of four specialist who work together. They even said she might need an MRI. Surely she wouldn't have Cerebal Palsy aswell?! Her CF paed said that mild cases of CP can cause tightness in the limbs.

I am feeling very sad. I am sick of Monash Hospital. I am sick of seeing all these differerent doctors. The poor thing is only 16 months and she has spent more time visiting doctors and hospitals in that time than I have my whole life.

She is also having a Bronchoscopy on the 7th March. Its just to make sure she hasn't cultured any nasty bugs in her lungs. She will be knocked out completely. I am very nervous about this. I am worried about her being scared without me being there.

Sorry for my rant. I am just feeling a little sad. I just never imagined having to go through this. I never imagined this for Alana. I just don't understand, why Alana....

Oh Lara big hugs to you, I can understand how you feel, it must be a drag to always be doing something else with the drs. I hope the other leg loosens up and fingers crossed there are no further complications. It would definitely be very unfair for darling Alana to have to deal with something else, that's for sure.

Try to take some time out for you guys, either as a family or a couple and maybe have a fun day where you can forget just for a little while about what is to come. I'm sure that Alana is in good hands with her medical team and she will be fine. I remember being very worried when they were going to put Jemma out to operate on her finger, but they do deal with this with kids all the time so I think they must have a few tricks up there sleeves.

Again hugs to you and know that I am thinking of you and Alana and sending my prayers your way too.
Best wishes Michelle

oh lara

hugs to you to, i really do feel for you and alana. i too hate the sight of monash hospital and i refuse to go back there.

i think about you guys all the time and hope alana goes well in her op, try not to worry they should let you go in with her when they give her the anesthitic (i know with jess they did) i was able to hold her and the anethsist put some strawberry smelling stuff on his hands (just so it is a nice smell for the kiddies) and then give them the gas thing and they just go to sleep, then you leave the room and they do the rest - and you are right there for when they wake up to, so alana shouldn't know that you weren't there - thinking of you.

keep us updated if you can

Lara, what can I say. You are a very Courageous women. It's ok to feel sad at times. We're not ment to be strong all the time. I am sure you and dp have learnt a lot over the past 16mths and I am sure little Alana is learning to deal with things in her own little way.

My thoughts are with you as you cope day by day with each new situation. Take care and feel free to off load any time. That's what this thread is here for. For us to help give you support and to listen.

im so sorry you are having to go through this - my thoughts are with you, alana & your family & i really hope that all these tests show up nothing - sending huge hugs

I'm sorry I dont have the right words to say.....
I wish for Alana, yourself & Frank that this would all just go away & leave you alone to get on with your lives...

I cant imagine how hard it is for you & your family....

Please know that we all wish you the best...

I hope the tests all come back just as you hoped for!!!

Lara I just wanted to say that I'm thinking of you and to send you a big *hug*
I'm glad that Alana enjoyed playgroup, and I bet you did too.
All the best for the Bronchoscopy in March.

Thank you everyone for your posts. You guys are great!

Michelle, actually Frank and I are going away the weekend of the 25th. Cystic Fibrosis Victoria are holding a Couples weekend away to Daylesford and we were able to go. My parents are going to look after Alana. I have never left Alana so I am a little nervous, but trust my parents completely. Its a well needed break.

Mooshie thanks for the info. I think if they don't offer for me to go in with her, I will ask.

Rose sometimes I forget to let myself just feel stuff, iykwim. Mothers especially feel that they need to be the strong ones. I just hold it in and then one day it all boils over. Not the best way to deal I guess.

Shannon I can always count on you to understand.

Thanks everyone!

Lara - you are most welcome to have all the hugs we can send, and enjoy that weekend away sounds like bliss. You will def miss Alana butit will help you feel strong and fresh again, just what the doctor ordered.

Best wishes Michelle

Hi Lara,
my 16 month old daughter Ebony has cf! I hope that your buba is doing well! I hope that she doesn't get sick very often! Keep up the good work! If you have any questions i might be able to answer them for you?!
I am currently 8 weeks pregnant so we are doing cvs at 12 weeks! I think that it is better to find out now if this baby has CF.

Hi Katie! Wow never expected another mummy with a CFer on BB.

Congratulations on your new bub. I hope all goes well. I guess the benefit of knowing this bub has CF (or not) before he/she being born is being prepared. I wish that I had that before Alana was born! I would prefer that then a phone call at 7 weeks old.

Alana has been very good. We are all getting over a cold at the moment. Alana infact has beaten her cold better than me. Go figure! I have just been given antibiotics as it won't go. Nothing for Alana!!!!

How has Ebony been? I hope well. When was she dx?

Ebony has been really well! I try and keep her away from everyone that is really sick! She has a better immune system than me!
We found out ebony had cf when she was about 2 months old. Had to go to melbourne and she was admitted because she was so tiny. I cryed the whole time i couldn't even talk i would just burst into tears. When we got home Ebony was really sick she ended up with pnmonia (how ever you spell it) in both her lungs, with a drip in her arm and help breathing with the tubes in her nose. Very scary cause we nearly lost her!
We actually put an article in the practical parenting Magazine about CF.
If you want another baby then talk to someone in genetics. They will tell you all of you options.

I didn't realize but Ebony and Alana are about the same age! Wow!