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Thread: Alana and Cystic Fibrosis

  1. #19

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    Hi Lara,



    That is wonderful to hear that Alana is doing so well!!
    What an amazing little girl... no wonder the paed is impressed!
    and the physio sounds like a great settling technique indeed!

  2. #20

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    Lara
    it is wonderful to hear Alana Daisy is doing so well. What a gorgeous girl and I love her beautiful name.
    I don't have a special child or with a child disability but I worked in Paed. ward as registered nurse for over 10 years. Special Children have the ability to exceed our expectations over and over (like Samual) and bless us amazingly.
    We have an adopted son who is one of our greatest blessing and also an angel daughter ~Charlotte Rose~ who was born still 1st Sept. 2004. @26wks.
    They coudn't tell us why she died - she looked so perfect. We will just never know.

    Wishing you the very best in life for your precious daughter Alana Daisy
    may she continue to bring you love,laughter and much ,much happiness
    Enjoy every minute of her. She is adorable. I will keep you in my thoughts and prayers.

  3. #21

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    Just thought I would give an update.

    Alana's last weigh in was a week ago and she put on 720g in 4 weeks.
    Which is fantastic. Her paed said that she is in the 25th percentile for her height and weight and he was thrilled.

    We also think we have won the war with the 4-5 poos per day and her terrible nappy rash. We had tried everything. We were just going to put it down to her CF and not worry about it to much. But we changed her formula from NAN HA to Heinz and what do you know, we are down to 2 poos a days for the last two days. Her nappy rash is almost cleared up by keeping her out of nappies as much as possible and slapping every cream and powder that we have on her.

    Her next weigh in is the 18/3 and I can't wait to see how much she has put on. When we got her weighed last week the Health nurse said that she looked nice and chubby (she had never seen Alana before). I beamed from ear to ear. It was the first time a stranger had ever said it. Most of the time we get that she looks so small.

    Thanks everyone!

  4. #22

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    Hey Iris that's fantastic news! Well done Alana, keep up the good work! We love 'em "nice and chubby".

  5. #23

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    Hey Iris,
    Things are sounding good, hope you are enjoying all the precious thngs that you do together. Just thought that
    i would pop in and say hi even though I have not a child with special needs/illness, I do have a younger sister who has an intellectual disability and is mildly autistic. And the other reason was, have you tried canestan cream (thrush cream) on Alana's bum? I was recommended to do this with Jack, then put some curash powder over the top. It works wonders!

    Take care.

  6. #24

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    I forgot to mention... the thing that worked really fast for my kids' nappy rash was BOZ ointment. The midwives put me on to it in the hospital, and it clears it up really fast because of the Zinc content.

  7. #25

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    JOJA canestan is one of the creams that we having been slapping on. Actually this is about the 6th time we have tried it. I guess with the less poos, it has had the chance to work. I am also putting a cortisone cream for the redness, then a zinc based nappy rash cream and then powder. And pop in and say hi anytime.

    MistyFying where do you get this BOZ ointment and is it very expensive?

  8. #26

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    You can get BOZ ointment from good pharmacies up here in Queensland. It's not real expensive ... the last lot I bought was under $10 for a pot that lasted a whole year of botty business

  9. #27

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    yay for Alana,

    I was wondering how she was going. She is a very special girl with very special parents.

    How are you both going? I often think of you 3.

  10. #28
    katanya Guest

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    Quote Originally Posted by iris
    Just thought I would give an update.
    Alana's last weigh in was a week ago and she put on 720g in 4 weeks.
    Which is fantastic. Her paed said that she is in the 25th percentile for her height and weight and he was thrilled.
    Lara that is SO fantastic, trying not to compare but that is what Felix has put on in 6 MONTHS! So you can feel EXTRA proud, you are doing such a great job.

    Good luck with the nappy rash, sounds frustrating! My favourite rash cream is Bepathen, it is amazing!

  11. #29

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    I am so happy for all of you Lara, and how wonderful for a stranger to notice how nice and healthy Alana looked. Great to hear the nappy rash is clearing too.

    Love

  12. #30

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    Thanks everyone!

    Katanya we feel really lucky with how Alana is going. Especially as we know that some CF bubs have alot of trouble with weight gain and have to have time in hospital. I'm sure Felix will put on the weight, especially now with the help of the dietician.

    Rose we are doing great. Alana is getting so big and she is learning to do new things all the time. It won't be long before she will be able to sit. I had her sitting without help before. She only lasted about 10 seconds before falling to the side, but it was so cute.

    Thanks MistyFying. I will have a look for it. $10 for a whole year, you can't go wrong with that.

  13. #31

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    Yay for Alana!!! =D> That is so great to hear how well she is stacking on the weight!!!

    I'm so happy to hear that you guys are all doing so great!

  14. #32

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    Well Alana has had another weigh in and put on 450g in two weeks. So she now weighs 6815g. I was so happy!!! I will have to see on Monday when she sees her Paed, but I'm sure she has gone up another percentile.
    The fatter she is the better it will be for her to fight infections. And with the flu weather coming up, DB and I are getting a little nervous about colds etc.

    She is eating like a machine. She is having around a litre of formula a day, as well as two lots of solids. I was to scared to feed her to much solids, but her dietician said let her have as much as she wants. Her mouth just keeps opening.

    Anyway will update on Monday after we see the Paed.

  15. #33

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    Thats fantastic news!! YAY for weight gain!!

  16. #34

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    That's awesome, Lara! WTG Alana!

    All the best for Monday.

  17. #35
    katanya Guest

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    That is wonderful Lara!!! Alana sounds like she is doing SO well!!

    I met a few other kids in hospital with CF, in one girl's case she was about 14 and had a lung infection, and she was the smartest cookie you've ever met, she was talking to the nurses about career choices, they were suggesting a entertainment job because she had the gift of the gab (an understatement!!), I can understand why winter is worrying you but Alana sounds like she gaining plenty of fat stores up just in case! Can I ask your secret?

  18. #36

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    YAY Lara, that is wonderful to hear! WTG Alana! \/

    I hope everything goes really well for you both at the Paed today!

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