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Thread: Felix's Chronic Interstatial Pneumonitis

  1. #91

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    I am sooooo impressed with your little man. It's a lot to handle, but he's doing it with such strength of character. Well done both of you.


  2. #92
    katanya Guest

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    I think you are right Shannon..felix has no fear of the actually hospital, but as soon as he's hits the treatment room he starts to cry..it's also the nurses uniforms that scare him, as the poor nurses are the one who do the yuk stuff not the doctors..

    I did feel bit faint when I left the hospital today..find again now..I can handle the expected.. just the unexpected is not good..

  3. #93

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    Poor little mite at having the tube put in again... and what a traumatic one it was,.. but WOW at how well he handles it all, what a little champion!! And you are too Katanya!!

  4. #94

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    I just have to agree with what the others have said, you are amazing katanya!! I know you didn't "choose" to have to go through this, but your strength is inspiring to me. And your little man is a trooper!! What a great guy he is!

  5. #95
    katanya Guest

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    Christy..like I've said before..not really amazing, just used to the things my boy requires..and I haven't always coped so well..but thanks anyhow

  6. #96
    katanya Guest

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    Update on Felix's tube..

    unfortunately despite all good efforts he hasn't agined enough yet.. (only 400 grams in 6 weeks) which sound like a lot but he was thought to gain 2.5 kilos in this time..so the tube stays..

    Well we are used to it and he's not losing weight which is a positive..he's still breatsfeeding and he's happy so fingers crossed his chest clears up and we can get the weight on before december and have it out before Christmas [-o<

  7. #97

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    bummer he didn't put on as much weight as they wanted but at least he has put on some - hopefully felix will love eating christmas goodies (like the rest of us) & pile on the weight \/

  8. #98

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    How are things going Katanya?? I haven't seen you around much lately... so I hope everything is ok with little Felix, and he is continuing to gain well...

    Thinking of you both!

    *hugs*

  9. #99

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    Oh Ambah I just had the same thought as you.... how are you both going Katanya?

  10. #100
    katanya Guest

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    Hey guys everything is good with Felix..I just have been super busy this week..and I have a new obsession of knitting wool soakers 8-[

    Felix is still having trouble gaining weight and vomiting in the morning..I have had to rig up a cooling pack over the Pedisure bottle because it has been so hot that I'm worried the milk has been going off and not helping with the vomiting This morning he still vomited even with the cooled milk, but not as much which is something..

    He has been AMAZING with the tube, he has had it on for 2 months and only pulled it once \/ which for a toddler is just incrediable I think..so as much as it's annoying it is also managable..the most annoying fact is that it restricts his water activity..so no swimming lessons till it comes out

    Anyhow we are menat to be going up to see his specialist soon..haven't got a date yet..I've been postponing as he's been unwell for 3 months ..but his pead wants him to go for the sleep study..

  11. #101

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    Katanya, great to hear things are good with Felix apart from the vomiting etc. Fantastic that he's going so well with the tube! What a trooper! Does it look like he might be able to have the tube out by Christmas?

    Take care.

  12. #102
    kirsty Guest

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    Okay Katanya I was going to ask what wool soakers were but I looked at Felix's website & it explains it all 8-[

    You sound like you are doing an amazing job & it is funny how once you become a mum you find yourself being able to do stuff for your kids that once you thought you would never be able to do. You are such an amazing woman.

    I hope that Felix is still feeding well & that all goes well & the tube can come out before Christmas. Hope that his vomiting after a feed settles down soon & maybe the cooler milk is working in this area a little???

    Hope all things continue to improve with your wonderful little man & that really soon we see a post letting us know that his tube is out.

  13. #103

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    Glad to hear Felix is doing well!

  14. #104
    katanya Guest

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    Thanks guys for your well wishes..HOPEFULLY [-o< the tube can come out over christmas..would be nicer for photos etc..anyhow we are lucky this technology exists..otherwise he would have faded away by now 8-[

  15. #105

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    Katanya good to hear the happy boy is still travelling along nicely. What a champion he is!

  16. #106
    katanya Guest

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    Last night his tube got blocked and I had to go in to hospital to get it replaced..it was so upsetting as he never pulls it out and he was so upset having it changed..He just looked at me when they went to do it as if to say "Mum why are you letting them do this to me?" or that's how it felt..not a good morning..

  17. #107

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    Oh poor little mite! Huge hugs to both of you, Katanya. I hope the process of getting the new tube in went as smoothly as possible.

  18. #108
    katanya Guest

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    Thanks Angel

    Well some good news..he has gained over 500 grams since last weigh in and if things continue the tube will come out after next appointment..in time for Xmas.. \/ he's now 9.7 kilos..so this is great!

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