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Thread: Alana and Cystic Fibrosis

  1. #73
    *Yvette* Guest

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    That's great Lara. Hope the feeding goes ok. It's a tricky one with the bottles & solids. We kept trying it both ways. Bottle first means not room for as much solids, but then if they're thirsty they won't settle enough to have their solids til they've had some bottle. And it's pretty tricky convincing a baby to have just a bit of bottle, or just a little water instead. Good luck with it. Btw, I've never been able to get my kids to use a sippy cup, but the ones with a straw are great. They seem to get the idea of sipping through a straw really easily, so it's great for little sips of water.


  2. #74
    katanya Guest

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    Alana is just doing SO well, it's great to hear! 8120g :shock:

    best of luck getting her to eat the meat, hope you have better luck than us

    I looked her website, she really is the most adorable little girl, I think it's more than her hair, she has a very doll like face too!

  3. #75

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    Oh thanks Shannon. It was lovely to read your post. And please don't apologise for not posting sooner. I fully understand how difficult it is for people to respond to hearing news like this. Its even harder for people when they are standing right in front of you.

    You just have to find something positive. I have never lived my life dwelling on things and I won't start now. Frank and I made a decision very early on that we would just get on with it and I like to think that that has helped Alana do so well.

    But don't get me wrong I have my days and I worry alot about Alana, but I just have to live day by day. One thing Frank and I have found the most important things is dealing with the now. We don't ask about treatments or how Cf will affect her in the future. When she gets there we will ask the questions. It keeps us sane.

    Thanks again Shannon it has meant alot.

  4. #76

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    Lara, you're an anbsolute trooper, and She's so very lucky to have you as her Mummy, your both blessed to have her.xx 4 u both

  5. #77

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    Lara- how rude of me not to visit this thread until now. It is so good to hear that Alana is doing well, and good to know that she is the same weight as jessica and 3 weeks younger as well.

    I also wanted to tell you how lovely it was to meet you, funny I kept thinking you looked familiar but I think that was because I had seen pics of you with Alana on the website, so I did know what you looked like.

    Anyway I will be sure to pop in here more often to keep up with Alana and hope she manages to escape the colds and yuckies that are going around.

    Best wishes Michelle

  6. #78

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    Well Michelle its so funny that you had posted this, as I was just about to post about Alana getting her first cold since being diagnosed. I must say Frank and I are little stressed about it, but trying to not blow it to far out of proportion.

    She started to get abit snotty yesterday afternoon, but didn't seem to bad. She went to bed and then every 1-1/2 hours she woke up crying. She was so snotty and it was making her cough because she was swallowing it. Usually if she has any mucus she can poo it out, but she is badly constipated, which is a whole other story. Lets me say there was not much sleeping happening here last night. Anyway her paed is away until Monday, so I was able to speak to the CF nurse, who said to get her on antibiotics (luckly we have prescriptions already-just incase) and she will be coming here tomorrow to check on her. She hasn't wanted to sleep all day. But I think that has to do with lying down making her feel worse. She is at the moment asleep on the couch with Frank. The only problem we have is that we are really struggling with getting her antibiotics down. She is absolutely cracking it. hopefully the CF nurse can help there aswell.

    Anyway she is also constipated, which is really concerning me, as it has been going on to long. We have her on coloyxl drops and they are doing nothing. I am worried that she has a bowel problem, which could be associated with the CF. I don't know. Her paed is aware of it and i have emailed again with my concerns, but won't hear back until next week. Will let the nurse know and she can decide whether we need it checked out asap or if it can wait until next week.

    Okay! Sorry for the long post, guess I needed to get some stuff out.

  7. #79

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    oh thats really hard *hugs* Its so hard to see them unwell & knowing that for your special girl being sick has a whole new meaning. & with constipation that doesn't help. I hope the CF nurse has some help for you!

    Whenever Matilda gets sick(we've had two bouts of tonsilitis in the past few months) she's up all hours & struggles to lay down with her breathing. Have you propped up one side of the cot mattress? I don't know if you can, but when Matilda was smaller & not as mobile I would put a rolled up blanket at one end of the cot to elevate her head to help keep the snot at the right place ykwim? & she always sleeps better on the slope. HTH

  8. #80
    Melinda Guest

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    Awwww, poor Alana!! I hope she isn't hit too hard with the cold and she manages to get some better sleep in tonight.

    I hope that you are able to get some good advice from the nurse when she visits.

    Take care.......

  9. #81
    katanya Guest

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    Lara that is not good news, no matter how envitiable a cold was it is always scary when your child has something like CF to make things more complicated..

    The digestive problem sounds concerning too, what are the potential problems for someone with CF? I know they don't absorb fat as well, but what could it mean?

    I was wondering also how the lung side of things works? As Felix has fibrocystic pneumonitis I was wondering whether it affects Alan the same way? Does she have constant inflammation in her lungs, or just the potential to prodiuce more mucus and infalmation that average?

    Hope you don't mind me asking, but the Cystic fibrosis clinic is at the same clinic Felix goes to at the RCH and I have read some of the things on the wall about it but don't understand that part..thought you might be a good person to ask?

    Hope little Alana comes out with her boxing gloves and gets this infection head on! The positive is her weight is SO good and she hasn't had nay other infections so far has she? So her system should be strong!

    Hope you are okay too Mama Lara..I know the feeling of fear with a sniffle..

  10. #82

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    Thanks everyone! Alana seems better today. She slept through until 5:30am, so that would have helped her alot. Still abit running in the nose and a slight cough. After not being able to get her antibiotics down this morning, I rang the pharmacy to get their advise. Anyway they said I could give it to her in a small amount of formula. Thank goodness as I was getting worried about how the hell I was going to get it down.

    The CF nurse felt that with getting it nice and early that one course of the antibiotics would do the trick. And since she is heaps better than yesterday that there is no fear of it hitting her lungs. So thats a relief. Actually she seemed more concerned about her being constipated. She is getting in contact one of the CF paeds (Alana's paed is away) to get some advise. We should hear back this afternoon or tomorrow morning.

    Katanya feel free to ask anything you want. Alana's lungs are at this stage are as healthy as anyone elses. She doesn't have any inflammation. Due to Cf causing mucus to be thick it becomes hard for them to move it, hence the physio everyday. The mucus traps bacteria causing infections and making it difficult to breathe. It does in the long term cause chronic lung disease, some quicker than others, but that is the outcome for most. Some need lung transplants. The healthier her lungs the better quality of life and longer she will live. Alana could possibly go through her entire childhood never having an admission to hospital, which is what we hope for. I must admit I really only know what I need to know for Alana now. I figure as she gets older and things crop up I will deal with it then. Hope that helped.

    Anyway I am feeling more relaxed now.

  11. #83
    Melinda Guest

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    I'm glad that she had such a good sleep and is a bit better today Lara! That's great news!!! I hope you get some advice about the constipation too.

  12. #84
    katanya Guest

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    Ahh so that is the difference, the mucus quality, So if she had what Felix has she'd be even sicker because his varies but hers would have trouble shifting? Now I understand why even a small cold gets you worried more than I did..thanks for answering my questions..

    Good news about getting in early, and also good news that if she stays free of infection she may never see the inside of a hospital (lucky girl ) Even though you know what she has there are still many variable's like Felix's condition.

    Hope her constitaption gets cleared up, and you see an pead ASAP, not nice for her!

    Great news about the antiobiotics going in the formula, that was one things I LOVED the nasty nasal gastric tube for..it was SO easy to give antibiotics and panadol! Felix fights having meds too!

  13. #85
    *Yvette* Guest

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    Hi Lara. Sorry to hear Alana has a cold. I suppose it had to happen some time, but is so much more of a worry for you with the CF. So the nurse comes to your house every day to do the physio? Sounds like you're getting really good medical care, the system does seem to work well for kids doesn't it. Hope the constipation gets sorted out easily. Great that she had such a good sleep!

  14. #86

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    Yvette we do the physio ourselves once a day. When she is ill like now, twice a day. We have a CF nurse and a CF physio, who work through the Royal District Nursing, that we can call on anytime for free. They are fantastic. Life savers! We probably have more contact with them than we do her paed. In Victoria we have such a great support system. Not only do we have the nurses, her paed but also a councellor, dietitian and a CF Physio at Monash. Also Cystic Fibrosis Victoria are great. They will do anything for us, even visit when your in hosiptal.

    Katanya great the info helped.

    Anyway must go, I'm of to do Alana's physio. Thanks again everyone.

  15. #87

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    Oh lara, sorry for jinxing you. Hopefully she is even better today, it is very concerning for you guys. Also hope the constipation is fixed soon, poor little bugger, she must feel awful! I took Jessica yesterday to the drs cos I too worry about things moving to the chest but for Alana it is so much more important.

    Hugs to you all
    Michelle

  16. #88

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    Well we have changed the laxative Alana was on and when I got home from work Mum said she definitely had unplugged herself. She did such a good job a change of clothes was required. Good on Alana for waiting until Frank and I had gone to work and Nana was looking after her.LOL! Frank finds it difficult at the best of times. He oftens wraps a cloth nappy around his face so he can change her.LOL!

    So what a relief. If she hadn't unplugged by tomorrow morning she was going to have to have a supository(?). Lucky!

  17. #89
    katanya Guest

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    lol that would have been quite a release..looks like you went out at the right time huh?

  18. #90
    *Yvette* Guest

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    lol, excellent timing Alana.

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