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Thread: Alana and Cystic Fibrosis

  1. #109

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    Yay for Alana< Lara that is great news. LOL she has overtaken Jesscia in the weight stakes.

    I am so happy for you cos I know you have been worried, but sounds like everything is very good.

    Best wishes michelle


  2. #110
    katanya Guest

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    Lara weighs 300 grams more than Felix 8-[ she's such a champ! You guys are doing so well! Obviously the eating issues aren't affecting her gains

  3. #111

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    Hi Lara

    I was just thinking about Alana and wondering how she's doing, as I haven't seen you around the boards for a bit.

    Hope all is well and you enjoyed Christmas.

  4. #112

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    Hey Christine! Yeah I don't get on much lately.

    Alana is doing well. Putting on weight nicely. She caught a cold christmas eve that stayed on a little longer than I would have liked, but with antibiotics it finally cleared up. Its only her third cold since being born, so I can't complain. As long as she stays out of the hospital!

    She is still not walking, but she bum shuffles all over the house. She has never crawled. Its really funny, people get a real kick out of it. She'll get there. We got it checked out, on GP's advise, by a Orthopedic Pead and he felt that there is nothing wrong, just taking a longer.

    Anyway, thanks for thinking about us.

  5. #113

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    Hey there Lara! I am glad to hear that Alana is doing well! Sorry to hear about the cold but I'm glad she's doing better now. Glad you could pop on you have been missed!

    *mwa*
    Cailin

  6. #114

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    Hi Lara
    so glad to see you back and hear that Alana is going along well, I double bummer the cold, but 3 so far is pretty good, jessica has had heaps more than that so you have done well. PMSL at the bum shuffle, don't mind the NOT walking thing, you sometimes wish they still didn't walk once they do LOL. And esp when you have a runner and a climber as I do. Keep well.
    michelle

  7. #115

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    Lara that's really great news! I have a nephew who bum shuffles.... gives us a bit of a giggle.

    Good to know you're all well.

  8. #116
    Debbie Lee Guest

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    Lara - good to hear that Alana is gaining weight. The bum shuffling sounds so cute.
    It's a pity that the CF kids can't get together at all. What a cruel twist, hey? It would be great for them to see each other and know that they aren't alone.

  9. #117

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    Hey everyone!!! Thanks for the cheerios, its nice to hear from you all.

    Debbie it is a bummer that the Cfers can't get together. The best support you could receive is from others in the same situations. Oh well thank goodness for phones, internet and email! She can at least chat online with others with CF when she gets old enough.

    She is starting her first day play group on Monday. This is a huge step for me, as I have been very cautious about these situations, as they can be a breeding ground for colds etc. But I feel that she is really lacking the interations with other kids and I think for her emotionally she needs these interations. I don't want her growing up paronoid or emotionally/socially stuffed, because of me, I would hate myself. I think she will love it. She gets so excited when we are out and sees other kids.

  10. #118

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    Hi Iris, how exciting to be starting playgroup on monday. I bet Alana has a ball with all the othr kids. I'm so glad to hear she is doing so well LOL at the bum shuffling - its so cute when babies do that.

  11. #119

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    Dach, Alana did have a ball. I was so glad that I took her. She was so thrilled just to be around some other kids.

    Update on Alana not walking. I got a referral from Alana's CF physio, to a Paed Physio. Anyway they say that Alana's right calf is very tight and that she won't put weight on it when she is in a standing position. They think that it could actually be uncomfortable for her. So, on Wednesday she is getting a cast on her leg, which is meant to help with stretching out the muscle. It will be on for a week to 10 days.

    They are also saying that she is having trouble going from one position to another. For example, lieing on her back to a sitting position. So we are basically having to show her how to do it so that she can learn.

    So I am feeling really positive about what they are doing and hopefully we have Alana running around the house in no time. \/

  12. #120

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    No its not CF related. They really didn't say why its happened. Not surprised. Half the time I think doctors just guess or make it up as the go along. LOL! No, they were great, I trust what their doing. So I guess its just one of those things.

    Yeah anytime you want to catch up. I'm not working anymore. Frank and I started our own business and I am also studying a course at TAFE. So I am more flexible with days too.

  13. #121

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    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.

  14. #122

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    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

  15. #123

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    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....

  16. #124

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    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

  17. #125
    mooshie Guest

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    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

  18. #126

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    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.

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