Re: Update on Ainslie, thoughts about domestic sharing, Jen,, CPT, CF parent illness

[Guest guest]

Terri,

Has Pulmozyme been in Tassie very long? I think (?) somewhere I read that

its only been in Aus. for a few years , you get 2 chances on it and if your

lung function has improved by a certain % then someone else gets a shot. We

were told this 3 years ago when Eilish was first dx. I hope its changed but

dont know. Eilish has had oh about 7 broncs. one each admin. I think that

they probably think well while she's out we may as well do the works. On

the last admin in Nov. they came to take somesort of nasal sample. I knew

they had already done the bronc (just waiting results) so I said no. I told

them that whatever they needed must be done while she's under, of course

except for the bld. tests. So of they went, no problem.

We had a cf conference in Adel. in Sept. and Terry , the ceo of cf Aus.

said we did have a great cf assoc. in Adel. with alot of community (cf

community) support. , my husband is going to Brisbane for the

conference next year as the assoc. is trying to raise funds for a adult camp

(for suffers) so as many as poss. can go to the conference, and he's on that

board. As usual I wouldnt be able to get a babysitter for a week, so I'll

rely on e-mails. Someone mentioned that Robitussen (only the one with

something that starts with a G in it) thins sinus mucus so I asked would it

thin chest mucus also and they said sure. So Ive been giving it a go. She

has had a watery nose since starting but no cough so I hope its just mucus

coming out, although she never has had a sinus prob. Whats that saying,

" never say never " . We dont do physio for Eilish on the mornings of x-mas

and her birthday, although I dont feel like I cant settle until that

lunchtime physio is done. Weird I know but I guess that you get into a

routine and when thats broken you feel strange.

We actually were going to have another child this year and even did 1 cycle

of IVF - long story dont want to bore you. But funnily enough weve changed

our mind due to listening to cf adults -another story again. Now tomorrow B

rian has an appt. to see our gp. for the big snip. So were really sure now

that our 2 cuties will be it for us.But if cf was cured tomorrow Id have

another!

Sorry for writting heaps. asked if I was typing the bible LOL.

from Adelaide (mummy to Liam 6 wocf & Eilish 3 wcf)

Update on Ainslie, thoughts about domestic sharing,

Jen,, CPT, CF parent illness

> Hi to all,

>

> After almost 6 months on pulmozyme Ainslie has gotten her first

> sinus/chest infection, compared to every second month (at least) last

> year. She had her dance concert X2 on Saturday, Fiday night it all

> started, Saturday all I could do was keep treatments up to her and keep

> the paracetamol coming. She DID NOT want to miss out on that day and

> what a long day it was. Hopefully she will come out of it quickly as I

> started her on cipro on Saturday morning and informed the doc on Monday

> morning and he agreed that I had made the best decision.

>

> She is becoming quite the seasoned performer, she smiled and sang and

> really really looked like she was enjoying herself. I was very proud

> her, her bubbly and vivacious personality shone through even though she

> had been a right little ...... all day to me.

>

> Husbands, wives and domestic sharing of 'jobs'. Yes I thought I'd have

> my little say on the topic. Men and women (not all) think differently,

> I find myself carrying most of the load but it wasn't always that way.

> Somewhere along the line Nigel started to take me for granted, yes he

> doesn't like doctors and hospitals so I do all those things, I do all

> the house work, groceries etc., but I refuse to take the dog to the vet,

> do the lawns, go into the roof, or stack wood. I do enjoy painting walls

> but find that I do not have time to do it.

> Now that Nigel has gone away for 7 months (his choice), been gone 2 1/2

> weeks now, I find that I am doing it all and handling it fairly well, I

> don't think he would be doing as well as I am. I suppose what I am

> trying to say is that I just do what needs to be done, sometimes I

> probably do too much and really need to delegate (or jump up and down)

> to get some help from Nigel.

>

> When he gets back life will be very different around here, I will be

> stronger for having coped with children, cf, uni, schooling, pets,

> house, car etc., and he will have to slot back in and take on a " fair "

> share of the whole workload not just what he chooses.

>

> Oh I have rambled a little, sorry.

>

> Jen. I certainly hope little Mallory and are on the mend.

>

> , brochoscopies aren't routinely done here, even when Ainslie was a

> baby and we were still in Sydney they weren't routinely done - they may

> be now. I have requested now that whenever Ainslie goes under next that

> I would like one done, even though both the doctor and I agree that we

> will probably find psuedo there, I would like to make sure. The docs

> here are not overly aggressive so I have to push a little for new

> treaments etc which can be frustrating, but overall Ainslie is a

> relatively healthy little girl.

>

> I checked out the website, very interesting, I wish that CF Tas had

> enough support to be able to do this sort of thing. I dropped off the

> board last year after 5 year involvement,I will get involved again in

> the future, after uni. Are you going to the conference in Brisbane I am

> contemplating going.

>

> Why did you give Elisha Robitussen?

>

> CPT. we have always given Ainslie it twice a day even when she is well,

> the only time she misses is when she is well and she has a friend to

> stay over or we are out very late as a family.

>

> Parent illness, I have recently had trouble with my ulna nerve in my

> left arm, thankfully after a few physio treatments of my own all is back

> to normal. Mentally I have had my up and downs, pregnancies have been

> my biggest stress and I am sure that I had depression after my

> termination and miscarriage it was all a little too much, now I

> terrified of becoming pregnant again even though I would dearly love

> more children and I had Connor after those events.

>

> Sorry for being so long, but I have been busy lately.

>

> Terri from Hobart mum to Ainslie 8 wcf and Connor 4 no cf

>

>

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