Update

CherryDrops
CherryDrops Member Posts: 18
edited 15. May 2012, 07:33 in My child has arthritis
Hello all

another 3day steriod infusion completed last week, lots of traumas again, due to the Morquio her veins are thinning and hardening so it took 4 attempts to do the cannula! They also started her on methotrexate at the same time. I took her back yesterday for her 2nd injection and she is in bed today missing school as feeling crappy. :( next week is her third and my final teaching one so after that I can do them at home which will be better than the 200mile round trip for a 10sec jab! My aim is to do them on a friday after school so that she can at least sleep through the grotty stage and have the weekend to feel more normal.
We are still waiting for manchester apt for the Morquio. Bless her the little poppet has decided she doesnt like all these long medical names so from now on she refers to 'Arty'(arthritis) and 'Mercury'(Morquio). She said giving them names makes them feel not quite so scary as they are part of her and she has to live with them whatever! - why can't we as adults be so mature in our thinking? Hope all here are not suffering too much due to the weather and other factors.
Wishing all a good day and plenty of ((())))'s.
Cherry Drops.xx

Comments

  • fowls48
    fowls48 Member Posts: 1,357
    edited 30. Nov -1, 00:00
    Hi Cherry drops


    Your poor little girl ,it brings tears to my eyes , she is a little trooper and so brave .I am waiting for my first hospital app , i am still on pain killers and naproxen .Hope your little girl has a good weekend .


    take care
    karen , fowls 48
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello CherryD, it's lovely to hear from you again. You do have a lot on your plate don't you? Couldn't your GP do the injections rather than you having to go all that way? Anyhoo, I wish you luck with doing them for her, I do all my jabs and so far so good! I hope you all have a lovely BH week-end. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Pegsboard
    Pegsboard Member Posts: 29
    edited 30. Nov -1, 00:00
    Hi C-D
    Good to here from u again. Wow your doing great with the injections (starting to administer them yourself). When we eventually start them the community nurse will come to us could this not ave been an option for you? I know it's a bit late now but a thought for any future treatment.
    Your girl sounds like an inspiration. What she is going through is enough to make anyone curl up and hide but she sounds like she's getting on with it bless her and you too.
    Take care
    Zoe
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
    hi All
    third jab went great last week, she refused the cold spray again! so all ticked off and this weeks will be at home, not bad for a first timer I think..! Unfortunately Lil is very unwell this week and we dont really know why. since sunday she has been unable to weightbear and just cannot get comfortable, as we havent seen anyone re her morquio diag yet it is difficult to know what is causing things but there is def a visit from 'arty'(!) taking place at the mo :cry: however the complete loss of grip and the squished chest and tummy pain I think may be 'mercury' raising his ugly head. She is also doing her yr 6 SATS this week which doesnt help but the school are being great they know that she is struggling so they are letting her go in for the test then come home again to rest for the remainder of the day - I'm sure that if we made her do a full day she would be off for ther rest of the week! she has tests every morning this week, I just hope the poor poppet can make it through. i have spoken to the rheumy nurse this morning and am waiting for her to call back with 'a plan'...
    Hope everyone else doing ok and making the most of the little times the sun pops her glorious head out! Take care all.
    Cherry Drops.xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's lovely to hear from you. Poor Lily (is that right?) she IS struggling at the moment but at least the school is being understanding and that is a good thing. You say she is generally 'unwell' - could she have a touch of a bug? I am struggling with a cold/chest infection at the moment and feel generally grotty as the aches and pains are worse. Anyhoo, hugs to you both and I hope you hear from the hospital soon - we like to hear of plans on here, it makes us feel a little more in control! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • fowls48
    fowls48 Member Posts: 1,357
    edited 30. Nov -1, 00:00
    Hi CD

    Poor little lily , Hope she can cope with the sats ,She really is a little trooper hope she can get some peace with the pain .
    karen.

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