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Thread: Alana and Cystic Fibrosis

  1. #37

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    Well Alana's Paed was thrilled with her. She now is sitting between the 25th and 50th percentile. So considering when we first saw him she was barely at the 10th, she is doing fantastic.



    She has also been taken of one of her meds, Zantac. Due to thinking that the change of formula helped with her many poos, he said we can take her of zantac and sees how she goes. Hopefully it works because it taste awful and poor Alana gags everytime we give it to her (twice a day).

    She has a little cold, but it has not affected her lungs. I feel a little bit stupid as I she has been breathing slightly heavier since Saturday, but didn't think it was a cold as she has been so happy and didn't seem bothered by it. When she had a cold a 6 weeks, she was coughing and was pretty miserable. So now I'm nervous about it. I've taken her temperature and its fine. I said to Frank that we won't give her a bath as I don't won't her to get cold and have wet hair. I hope I'm not overreacting.

    So we don't have to go back for 2 months!WOOHOO! I hate going to the hospital. I said to Frank that when we walk into Monash Hospital and smell that hospital smell, I automatically get this nervous fluttery feeling in my stomach. My anxiety level sky rockets and it takes me hours after to calm down. But 2 months!!!!!!

  2. #38

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    Lara that's fantastic news. Well done Alana!

    I know exactly what you mean about that "fluttery feeling", and all I can say is that it does get better with the passing of time.

    Hope she continues to do well, and this little cold is over before she knows it.

  3. #39

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    Hi there Iris,

    I was just wondering How Alana was going? She is coming up to 6mths now if I am correct.

    Hope you and your family are well.

    Samual is doing really well and has not been in hospital for a while now. Will prob be in around july for a tune up all going well.

    Give Alana a huge hug from us all

    What meds is Alana on? (Just out of curiosity).

  4. #40
    katanya Guest

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    Hi Lara

    it's so wonderful that she is going off one of her meds, and that everything is going well! lucky you not having to back for 2 mths!!

    I was wondering if Alana is going to get the flu vacination? felix's specialist said we should get it? apparently children at high risk have it in 2 doses..i just wanted to see if she'd had it and whether you had any effects?

  5. #41

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    Hey Lara that is excellent news that you don't have to go back to the hospital for 2 months! And also great to hear that she was able to be taken off the zantac too! \/
    Sounds like things are going really well with you guys, I'm so happy for you
    I hope her little cold is better by now too...

  6. #42

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    Katanya, Alana hasn't had the flu shot and her Paed never mentioned that she should get one. Frank and I just got ours (I have a huge red mark from it-ouch!). Though I did mention it to our GP and he thought that she would be to young. But now that your specialist has said something I am going to email Alana's Paed and see what he says. So I will let you know.

    Special Child we are doing great (except for this problem I have about not being about to SLEEP!!!!!) Alana is doing fantastic. She has enzymes (1 1/2 caps) before each feed and salt powder once a day. Her dose of enzymes is quite high unfortunately.

    So glad to hear the Samual is doing great. Hope he doesn't have to stay to long in hospital for his tune ups.

  7. #43
    katanya Guest

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    Yes Lara I would talk to your Specialist about it, as when I rang the GP they told me no it was not given to children under 12. When I told them that our respiratory specialist had recommended it they looked up the book(immunisation guide) and sure enough it had a section on children at high risk and the conditions included CF, which is why I ask. They give half of a normal dose and then in a month they give it again.

    We have to wait a couple of weeks as he's back in hospital in a week's time, and I didn't want to risk a reaction before his biopsy.

    To be honest another needle doesn't thrill me, but as the specialist said for babies like ours a chest infection is a lot more of a threat than to the average child..

    I hope you find out why your not sleeping, is it stress? Because my Mum used to be such a bad sleeper until she resolved things that were worring her. I know when I am stressed I wake up thinking all night, can't turn my brain off. Anyhow I hope you get a good nights sleep soon!

  8. #44

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    Thanks Katanya for the flu shot info. I must say that it would make me feel a little better if she was able to get one.

    I think that my sleeping problem is stress. I simply cannot turn my brain off. In the last 6 months so much has happened and I think that it has affected me more than I like to admit. Its not like I'm sad or depressed and can't handle things. I just can't wind down. And I worry about things more than usual. I think about things that haven't even happened and stress over it. ](*,) I don't really want to resort to tablets.

    Oh well, I'm sure as time goes on I will hopefully start to relax. I HOPE!

  9. #45

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    Iris, I'm not suprised that you find it hard to relax. I think that motherhood in itself is stressful without the added worries that CF brings. Have you thought of using any alternative relaxation methods like acupuncture or massage or reflexology or aromatherapy etc. They're certainly a better option than pills.

  10. #46
    katanya Guest

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    Lara it is natural for you to not be able to turn off, I know that my effectiveness with coping has it's good times and bad. People say to me "oh you are dealing with it so well" I think I am dealing with it because I have to, because if I get too down, then what will Felix do? I don't mean that in a Matyr kind of way, but realising that you are needed kind of kicks in that survival mode and enables you to cope.

    I wonder if you are going through this too, sometimes when nothing is going on (no Drs visits or tests) it is then that I feel like I am sinking..I know that I have times where I say awake thinking about big stuff and the small stuff.

    Is there any way you have access to that councillor still you mentioned at some point?

    The suggestions that dachlostar mentioned are excellent, I know if you are anything like me, setting aside "me" time is SO hard, but it's got to fit in somewhere!

  11. #47

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    dachlostar those are good options. I've always wanted to do yoga. Maybe I should check that out. I work for a health food company and we have a product called Composure, which is suppose to help with anxiety etc, so I have started to take that. I'll give anything that not a sleeping tablet.

    Katanya Alana's specialist has given the go ahead for the flu shot. He said either in half or quarter the adult dose. So I'll ring our GP and get it done this week. I'm not thrilled that Alana has to get a needle either. But I do feel some what relieved that she can get it. I would rather her have the needle than a chest infection, as you said.

    I can see the councillor anytime, but I really don't want to. But I am going to a dinner on Thursday night for newly diagnosed with CF through CF victoria. So I get to meet some other familes with CF. My mum is coming with me as she looks after Alana when I'm at work on Tuesday and Thursdays. Frank can't come as he is a baker and starts work way to early. I'm looking forward to it, but I'm always shy when meeting new people. I know I won't sleep Wednesday night worrying about it! LOL! Having mum there might help though.

    Gosh, I've gone on enough!

  12. #48
    katanya Guest

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    Lara that dinner sounds GREAT, what a fantastic support network to enable you to socialise and meet other families affected by CF! I can understand why you don't want to see a counsillor, I'm not convinced it would be the answer for me either, I tend to be able to talk to friends and family anyhow.

    Shame that your partner can't go to the dinner but great that your mum is able to come too. Have a great time and hope you meet some new friends!

    That is good about the Flu vac, I am having second thoughts about getting it to be honest, and I am wondering if I got it instead, that maybe the antibodies would be passed along through my breast milk? I will talk to the specialist, because a friend told me that they dont prevent you getting the flu anyhow?

  13. #49

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    Excellent to see Alana's progress!!

    You're doing a great job coping (and you too Kat), but there are red flags waving. All this stress and anxiety can put you guys at higher risk for depression. This is a very good reason for you to find the time for yourselves. OK?, very important!!!!!!
    *taking off my bossy boots again*

    Valerian is good stuff too, Iris - but you probably knew that, where you work!

    Kisses

  14. #50

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    LuLu your not bossy at all. Actually its nice to come on to BB and feel that you have support, I don't always feel that from my friends. I guess they are all preoccupied with whats going on in their lives.

    It has concerned me a few times about depression, but I'm very lucky to have Frank as he is a real hands on Dad and is cool with me having time out. He works really hard himself, so he gets timeout by going down to the farm. Tomorrow I'm getting my hair done, so some me time. Yay!!!

    I have considered the Valerian. I just want to try a few other things before that. My mum thinks I go to bed to early. I generally go between 8:30-9:00. So I am going to try staing up a little later the next few nights and see how I go.

    Thanks!

  15. #51

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    Alana is a lucky girl having you two as parents, you're both obviously emotionally intelligent people.
    YAY! for getting your hair done, I always feel 100% after I have mine done. My hairdresser is a close friend so we get to catch up, but she is also the most BRILLIANT one I know. She always does it exactly the way I want, only better! Man, I'm booking in for next week!

  16. #52
    *Yvette* Guest

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    Hi Lara! Have only just read this thread fully, and just wanted to say hi here coz I don't see you in the vic thread much. Sounds like you're doing brilliantly with Alana, she looks so gorgeous and happy. Lindsay has worked a lot with CF kids as a children's nurse, and tells me how hard it can be. Tai Chi would be my relaxation suggestion, I knew someone who teaches it and it sounds great. Maybe I'll get around to it one day, wine and chocolate are what I relax with now, lol.

    Alana obviously has great parents, & it sounds like you and Frank are looking after each other too. O

  17. #53

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    Thanks Yvette! It can be hard at times. Not so much looking after her, as honestly thats pretty easy. Its the worrying about her getting sick. The hardest thing I have found is when we go out, I know this sounds nuts, but I stress about people wanting to hold her and smoking. And unfortunately not everyone understands my anxiety about this. I am hoping as she gets older and I get more use to her CF that I will calm down. I don't want her growing up with issues.

    I have sorted the sleeping concerns by going to bed later. Stupid I know. You think that I would have realised this myself, but it was my mum. #-o

    Thanks again!

  18. #54

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    Iris I just have to say you have every right to not want people to smoke & hold Alana. It is Huge. My cousin grew up with her parents smoking in the house & they didn't know any better at that time. (you think it sounds reasonable now, but I guess 27 years ago things were different..) anyway when her mum moved her to live with us for a while and there was a no smoking policy in my house, she got so much better. She was struggling and in hospital for around 3 months of most of her life, and once in our house she never went to hospital at all... only after she moved out & in with one of her mum's boyfriends who, you guessed it smoked. Then she was in hospital within 2 months. So, contact with passive smoke must affect them, and maybe gently letting people know who want to hold her that because her lungs are at a great risk its better for her not to be too close to passive smoke. Sorry for the epic, but I want you to know it is okay to be firm about this. O

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