Kayleigh's Week

illihor

I thought I would keep an ongoing post of how she's been every week. I've been meaning to do it for a while but just keep forgetting lol.

Well up to this weekend so far this year has been so different compared with last. She's more positive and we're finally building her stamina up now. She can now walk to school, spend the day there and 60% of the time walk all the way home too although I get a lot of grumbles and complaints but she never says she's hurting just tired and the more I've pushed her the better she's gotten. Think most of it was my letting go and pushing her instead of saying ok you can sit.

I must admit if we spend a morning in town she can't do that yet, but she lasts so much longer than she ever used to. At school she seems to be doing well but lately has been using the chair a lot (instead of sitting on the floor) and this tends to coincide with days that I make her walk to school. Part of me feels really really guilty for pushing her like this but I'm starting to see some benefits and odly happiness from her for being able to do it. My boys (6 and 8) are fantastic at reassuring her especially my 6 year old, he loves giving her stickers when she makes it the whole journey.

Oh another big development she is now dry throughout the night yippee. I missed the opportunity when she was 3 and ready to be trained due to the flare up of arthritis and she struggled so hard to get out of bed and always did an accident and although at the time she cried so much I told her to stay in nappy's as it wasn't doing either of us any good. Since then we kind of just got into a rut and forgot about it. 3 weeks ago she suddenly asked not to have one and first two nights were dry then next 3 wet and she screamed at me to have her nappies back but I said no (again felt horrible that night going to bed) but guess what she's been dry EVER since not one accident. She will sometimes call out at night and ask for help to get her to the toilet but she's done. makes the tough loving worth it especially when she got her colour changing doll to go in the bath.

As for this week, it's been a bad week so far. Saturday she started with a fever that jumped so quickly to 39.7 and there it's stayed pretty much ever since. Took her dr's on Monday and she's got an ear infection so on antibiotics but she's also got a heavy cold. i'm hoping the temp will sort itself out soon this morning she woke and was already 38.7 much longer and I might have to take her back to dr's but I'm able to control it at home so for now happy to leave it as we are. Looks like she'll be having 2 weeks for half term now as I don't see her being well enough to go school tomorrow and tbh what's the point in sending her in for one day when she's missed all week lol. Spoke to her rhuemy nurse yesterday to order more MTX and she told me not to bother with either Enbrel or MTX this week, I knew she wasn't going to have Enbrel due to anti-b's but she said if she's not on the mend by today then not to give MTX either, so half term could be fun notttt.

Anyway that's my update sorry it's so long shouldn't be as long in future haha oh well you know me I do tend to waffle on.

Michelle xxx