My Week – 09/04/2016

So another week has past us and it is time for my weekly post on the exciting life in the StressedMum household.

I will start off with an update of my Daughter as I know a lot of you are following her story.  Monday, I arranged to meet up with my friend, her Daughter is also a friend of my Daughters and they are at the same school.  We decided to meet up at our local garden centre for a catch up.

As parking is difficult there, I rang to ask if I could possibly park in a disabled parking bay even though I did not have a blue badge (this is something, thanks to a friend, that I am currently looking into).  They said I could which made things a little less stressful.

Our friends met us outside, and walked in with us, I was so proud of my Daughter, as although it was very slow and a very long way for my Daughter, she managed it. I was surprised at some looks she got though, and yes my heckles did go up a bit, but that is the protective Mum in me coming out. Yes she was walking at a snails pace, yes her legs were weak and she stumbled, but she had hold of me the whole time, she is still a human being not someone with two heads and green and purple skin.

Once drinks and treats had been purchased, we sat and chatted the girls had lots to catch up on, and it was lovely to see my Daughter chatting away and out with a friend, I did have tears in my eyes at some points.

Tuesday, my Daughter had a very bad day the day before really took it out of her, and at bedtime, when she went to go to the bathroom to brush her teeth she fell in a heap on her bedroom floor. I have found the best way to deal with set backs is laughter, and we were laughing while trying to get her up, although she was in pain, I kept her laughing.  Luckily my Mum was about, so she helped me get her up and back into bed, and we forgot about the teethbrushing for one night.

Thursday, she was bored and we went for a little trip to Tesco, as she can push a trolley and walk slowly, so with a trolley we went and brought a packet of biscuits and some juice :).  Friday she wanted a trip again so we found ourselves back in Tesco, I needed to get more shopping and this tired her out so, I ended up standing her in a quiet area and I was running back and forth with shopping.

She is back at school next week, well meant to be, I have no idea what to do at the moment, she will not be able to cope with walking in or around school, but I need her there.  We have tried her with walking sticks (my Dad uses a stick) but she didn’t like it and was unstable, her Dad has crutches and I adjusted them and tried her with those, she hated them.  I don’t want her to have to use a wheelchair, unless really needed, as I don’t want her to rely on it.

It does break my heart, when I see friends out and about with their kids, or hear about her friends doing this or going somewhere, and know that this would have been her usually.

She is having a quiet day today, she is suffering from yesterday, but we are out at a family meal tomorrow, so we have told her to rest up so she will feel better for tomorrow.

I spoke to the Consultants PA the other day, and he unofficially told me her diagnosis, which is being sent to our GP, so although I got confused, we now ‘think’ we know what it is, I should have copies during the week.

How do we feel, I am unsure, I think until I actually see it in black and white I won’t believe it.

Max seems to becoming a star in his own right, he did another ‘cooking with Max’ video this week and the amount of emails and messages I am getting about him.  We have decided to make it a regular thing, so there will be lots of Max videos coming up.

So My Week, I am so proud of my Daughter, she is trying so hard to get out and about and back to ‘normal’, she really does have a stubborn streak that is shining through right now.

How has your week been?




Leave a comment

  1. 9th April 2016 / 10:57 am

    Oh your poor girl – I hope the diagnosis means that they can get her feeling better soon xx

    • admin
      9th April 2016 / 1:18 pm

      Thank you, it will mean she will get the support she needs which in turn will make her feel better in herself. We are preparing her for it, although not told her yet what it is, she is being amazing about it all though x

  2. Rebecca Smith
    9th April 2016 / 3:45 pm

    I hope the diagnosis helps in getting your daughter to feel better soon. You sound so brave and so proud of your daughter x

    • admin
      9th April 2016 / 5:13 pm

      Thank you, I am very proud of her, she has always taken things in her stride, yes she gets upset that is natural, but she is a fighter and has her Dad’s determined streak in her and that is showing so much at the moment. She really is trying so hard x

  3. 9th April 2016 / 4:45 pm

    As hard as it is, I’m pleased that you finally might have a diagnosis then hopefully you can focus on the right treatment. Must be so hard for you all xxx

    • admin
      9th April 2016 / 5:12 pm

      Thank you, myself and my Husband have been saying it is bitter sweet really we want a diagnosis so she can get the support and help she needs, but we also want her to get better and be ok. The only good thing is although we have always been very close, we are even closer now and she said yesterday she really does need me, it is nice to be needed again although would prefer it if it wasn’t under these circumstances x

  4. 9th April 2016 / 4:53 pm

    It’s good that your daughter is trying to get out and about, I hope she is feeling good enough to go back to school next week x

    • admin
      9th April 2016 / 5:10 pm

      Thank you, she is trying so hard bless her, I was talking to her earlier and trying to work out how she can get around school easily, I think it is going to be quite hard for her, she has physio on Wednesday so we are going to discuss with them if there is anything that can possibly help her x

  5. Ickle Pickle
    9th April 2016 / 7:35 pm

    I am glad your daughter had a little trip out – it is such a shame she gets wiped out with it all. As for Max – well, he is rather gorgeous! Kaz x

    • admin
      9th April 2016 / 8:11 pm

      I know, she got some treats as well for being a star, unfortunately only Tesco but it is the easiest place to go. It is all part of the illness with the getting wiped out. Max is gorgeous I am biased even when he is being naughty or arguing with me, he just has to walk into the room and he puts a smile on my face 🙂

  6. 9th April 2016 / 6:38 pm

    A diagnosis is certainly a step in the right direction. I wish you the best of luck! x

    • admin
      9th April 2016 / 8:12 pm

      It is as at least we can start getting the support she needs, thank you x

  7. 9th April 2016 / 9:25 pm

    Sounds like an incredibly tough week, though I would definitely say that a trip to the supermarket should involve the purchase of biscuits, so well done!

    • admin
      9th April 2016 / 10:48 pm

      It is a pretty normal week at the moment unfortunately, but yes you have to buy biscuits it is a must x

  8. Helen Clark
    9th April 2016 / 9:39 pm

    What a brave girl you have, it must be so tough on you all. I hope the diagnosis comes soon and that it will mean she can get the treatment and help she needs. Xx

    • admin
      9th April 2016 / 10:43 pm

      Thank you, she has been amazing, she does have her down times but she is doing so well and trying so hard x

  9. 10th April 2016 / 12:09 am

    Well done to your daughter she seems to be trying to so so hard and I know how awful it can feel to do that at times. x

    • admin
      10th April 2016 / 7:17 am

      She has tried so hard, and am so proud of her x

  10. 10th April 2016 / 5:42 am

    Oh my goodness I can’t imagine how difficult it must be for your daughter, but well done to her for getting out and about for a bit this week. Sending lots of positive healing thoughts.

    • admin
      10th April 2016 / 7:16 am

      Thank you, she has been a star this week x

  11. 10th April 2016 / 6:06 pm

    I’m so sorry to hear she was in pain, poor little one!

    Thank you for sharing!

  12. 10th April 2016 / 6:08 pm

    Thank you for sharing such a personal subject! I’m so sorry to hear she was in pain, poor little one! Thank you for sharing!

    • admin
      10th April 2016 / 6:35 pm

      Thank you, I want to share as there is not really much out there for parents going through this, so even if it maybe helps one other person, they will know they are not alone x

  13. 10th April 2016 / 7:30 pm

    You sound SO proud of your daughter! Great being so honest and sharing her story

    • admin
      10th April 2016 / 7:46 pm

      Thank you, I am very proud of her, she has had a rotten start to the year and is trying so hard x

  14. 15th April 2016 / 5:59 pm

    This is a great idea, it’s handy if you want to sed something a bit different.

    • admin
      15th April 2016 / 8:51 pm

      I know hoping I get sent one 🙂 x

  15. 15th April 2016 / 8:01 pm

    It’s lovely to hear that you’re daughter is trying to get out, it will be the best thing for the both of you. It’s great that your sharing such a personal thing because without a doubt there will be somebody out there going through the same or similar thing and knowing that you’re not alone is a precious feeling! Hope everything gets better!

    • admin
      15th April 2016 / 8:50 pm

      Thank you, I am hoping that sharing her story will help others, it is quite a lonely feeling but she is trying so hard x

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