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Thread: Alana and Cystic Fibrosis

  1. #91

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    whew what a relief! for both of you


  2. #92

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    Alana has super timing, couldn't ask for anything betterLOL.

    I bet she feels so much better [email protected]

    How's the cold?

    Cheers Michelle

  3. #93

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    Michelle the cold is getting better, just a little snotty. She has about 15 days of antibiotics, so I'm sure it will well truelly gone by the end of the course.

    Well I found out why the new laxative worked so quickly. Frank told me the dosage as 3 times 5ml a day. So she had a dose late last night, this morning and lunch time, then she did her....you know....poo LOL! well when I read the back tonight, it was meant to be 1 times 5ml per day for 3 days #-o I'll make sure I read the dosages from now on!LOL!

  4. #94

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    I had to laugh Lara, it may be better if you read the instructions, Does Frank have glasses? LOL Oh well the jobs done and Alana is ok so that's all that counts.

    Cheers Michelle

  5. #95

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    Michelle Frank doesn't wear glasses, but I wear reading glasses!LOL! #-o ](*,)

  6. #96
    katanya Guest

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    Hi Lara,
    Just wondering how alana is doing also? how is the rest of winter treating her?

  7. #97

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    Katanya to be quite honest its been abit stressful these last couple of weeks, hence why I haven't been on to much.

    Alana decided that she was going to refuse to eat any solids and to make it worse, also her enzymes. The solids I could handle, but the enzymes have driven me to insanity. Of course if she doesn't take the enzymes she can't digest her food properly, meaning loss of weight, possible stomachs cramps etc etc etc. She is just spitting them everywhere. We had to see a speech pathologist, which I found pretty useless. We know its behavioural. But didn't get anything from it that I hadn't tried or knew.

    Anyway some good news is that she is taking some solids, but only heinz jar stuff. Which is fine. But still having no luck with the enzymes. We are going to try those heinz gels for the enzymes, to see whether that will help. Maybe she is just sick of apple.

    I don't know why I am stressing so much and getting so upset. She has put on weight since her last weigh in. And she is really happy. She got over her cold really well. But emotionally I'm not coping. I feel stupid.

    Anyway thanks for asking.

  8. #98

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    Hey Lara,
    Just wanted to let you know that I realy feel for you. My dd is sick at the moment but it is nothing compared to a life long condition that your little family live with daily. I'm sure you and dp do a wonderful job. I know saying that does not make things easier. It won't make her eat her enzyms but I'm sure she is a very special girl and given to you because you are very special parents that love her very much.
    :hugs:
    Take care

  9. #99
    katanya Guest

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    Lara, you've said it before to me, the gaining weight aspect of CF is one of the most stressful parts, not to mention getting those enzymes into her.
    I know how hard it is to try to feed a child that refuses to eat, it is a sad nightmare, somehow it is something we as mothers instinctively take very personally, I just felt/feel like a big failure most of the time because my child can't gain weight.

    It does sound behavioral, and I know like you that the more you stress that the more they turn it against you..Felix will refuse the spoon I'm holding then I put it dow and he'll put it in his own mouth.

    I was thinking that maybe Alana is like Felix and likes to feed herself? One thing that works for us is a bowl of food he likes with his spooning happily (a hit and miss affair still, although he is getting pretty good now)

    and then I get a spoon and sneek in spoonfuls while he thinks he's doing it all on his own..maybe you could get in enzymes this way?

    I am really happy that she is still gaining weight despite the refusals, but I know it wears you down..

    I noticed you had been here a bit less lately, and I wondered how you guys were going, you know I understand a part of what you are going through (I guess no one can ever understand full another persons' journey with this stuff anyhow)

    Hope your new ideas work and you get some time out too, food is the worst thing..I would be happy exclusively BFing felix for the rest of his days it's one thing he never refuses! (I might have breasts to my knees and social problems, but hay I would never ahve to coax him to eat again!!)

  10. #100

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    Oh lara you poor thing, I was just asking where you were in the 9-12mths forum.

    I too am having trouble getting Jess to eat, and I am trying the spoon thing too. SHe loves finger food, but anything I try to spoon hr she is shaking her head and hands. Today I gave her toast and shovelled weetbix in between, she ate most of it. Can you put the enzymes in something else?

    And as for stressing I am too and Jess doesn't have any other condition, she lost weight last month and I wasn't happy, figured I'm not feeding her right, but I really do know that's not true, she was unwell and teething and being stubborn, just like Alana.

    Chin up, try any crative way you can to get that food in....whatever works is good, and what ever she wants to eat is also good .

    Remember you are a good mum!

    lvoe to you and Alana
    Michelle

  11. #101
    *Yvette* Guest

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    Sorry you're having a stressful time Lara. Mealtimes can be so frustrating sometimes with little ones, it must be so much more so when the enzymes & weight gain are an issue. What form do the enzymes come in? (ie a powder or liquid additive?). I'm just asking Lindsay & he says it can have a funny smell, I suppose that makes it harder to sneak in.

    Lol @ Alana being sick of apple. Whenever there's something Angus will happily eat (he went through a banana craze, but now will only have it mashed in weetbix) we just keep feeding it to him morning noon and night. It's hard sometimes to break out of a habit when something has been working and then isn't any more, & tired mummy's aren't at their creative best.

    What was the speech pathologist about? At 9 months obviously only a little babbling expected. Was it just to rule out any physical reason for spitting out the food?

    I'm not very good with creative suggestions, couldn't get Angus to eat any dinner last night (bit grumpy with a cold/teething). Perhaps I should try the spoon/toast trick, or just give him weetbix & banana for every meal, lol. I think it's really important not to make a big deal out of it & avoid letting them see you upset by it (need good acting skills, lol). Sometimes too, they might be tricked into having some of mummy & daddy's food, like it's their idea.

    Don't feel stupid, we all get stressed out and you have plenty of reason to be. Sounds like you're doing a great job. You're a good mum!

  12. #102

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    Well no luck so far. The apple had nothing to do with it. She won't take her enzymes in anything. We are tricking her at the moment. Pretending to give her the bottle and as she opens her mouth, we sneak the enzymes in. And giving her solids that don't require them. But its not the best way, but it will do. She must be getting enough down as her food isn't going through her, we would be able to notice it with her poo. So that is good.

    Yvette her enzymes are like tiny spheres. They need to be taken down in an acidic food. If they are not, the stomach acids will dissolve them before the food hits her stomach or something like that. They can't be crushed. Thats the tricky bit you see, there is not to many options on what you can do. She can't swallow them, so the only other option is in pureed apple or some other acidic food.

    The speech pathologist just watched her eat. I never realised that was what they dealt with. Honestly it wasn't worth it. I could have dealt with this via her dietitian.

    Anyway just dealing with it. Since she is happy and not losing weight I won't worry to much........yet!LOL!

  13. #103

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    I think your darling is just being stubborn LOL, which is not fair to such a lovely mummy, is it? She has worked out that she doesn't want the enzymes and it's a battle of wills, keep persevering Lara, sooner or later you'll win! And if she is well otherwise then you don't have to stress so much. Easy for me to say I know, but I am hoping it is just a very short phase!

    Best wishes Michelle

  14. #104
    katanya Guest

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    ahh Lara how frustrating ](*,) at least you have a back up method but would be nice if she took them willingly..sounds like she is doing well still though!
    I think Felix has gained weight , but he's just got sick again and I'm worried that will skim the weight off again.. it's a neerending battle isn't it?

  15. #105

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    Hey Shannon! Now I don't know all the nitty gritty, but a 'tune up' is having IV antibiotics for a lengthy period of time and full on physiotherapy. Some could be in for 10 days, others, depending how bad they are could be in for 3 or more weeks. Hopefully Alana won't have to experience 'tune ups' for a long time. Alana goes to Monash.

    They use to put the CF kids together when they were doing 'tune ups', but now because of 'cross-infections' between CF'ers they have to be separated. Its a shame because the CF kids could build such a strong bond, being able to relate to each other. If we have a CF Victoria get together we can't bring the kids.

    Thats interesting about the sister. I assume that her sweat test came back negative, so she is definitely doesn't have CF. I would have thought that the parents of a 6 year old would be able to make the decision whether they wanted her genetically tested.

    Well I guess you could definitely understand, being what you and Jessalyn have been through, that you just find that strength from somewhere. I guess all the physio and meds has become the norm around here. We don't know any different.

  16. #106
    *Yvette* Guest

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    Hi Lara. That is a bummer about the CF kids not being able to get together.

    I tried the double spoon trick with Angus (was it Katanya who suggested it?) & it worked brilliantly! I don't let him dip his spoon, he just bangs it around, and will open his mouth for the real spoon.

    Lindsay was just saying how kids who need enzymes learn really early to take the capsules. I can't even get a 12 year old to swallow a panadol, lol.

    Glad Alana doesn't need the 'tune ups' at this stage.

  17. #107

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    Just thought I would post an update.

    Alana's lastest weight is 9.4kgs. Another fantastic weight gain. She had her paed appointment today and he is very happy with her progress. She is now above the 50th percentile.

    We mentioned that she is still getting constipated, but he seems to feel that its due to her not drinking enough water. We have been trying, but we find the only way is to get her to drink it is in a mug. Very messy and she will only drink a little. but we will persevere.

    Also saw her Dietitian. She was pleased that Alana has now started to take her enzymes again. Even though it didn't seem to have a impact on her weight gain. She is still having issues with the solids, but the dietitian said just to keep doing what we are doing, as she is happy with her weight etc etc.

    Anyway I figure that Alana doesn't have teeth yet, so she can only handle certain foods anyway as she doesn't have any pegs to chew with. Also she isn't crawling, so she wouldn't be burning of heaps of calories, so she wouldn't be as hungry.

    Oh as for the crawling, again her paed didn't seem worried. He tried to stand her up, but Alana would have none of it. She refuses to put weight on them in a standing position. He thought it was very funny. He thinks we have a very strong minded bub. I was like NO ****!!!!!

  18. #108

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    Lara that's great news. She's really doing well with weight gain, isn't she!

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