My Week – 09/04/2016

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.

Meeting friends

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 her, 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.

Drinks and a catch up

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

A bad day

Tuesday, my Daughter had a very bad day the day before really took it out of her. 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. 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. We forgot about the teethbrushing for one night.

Another outing

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.

Mor chats with the Consultant

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?



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Comments (29)

  • Sonya Cisco 3 years ago Reply

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

    admin 3 years ago Reply

    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

  • Rebecca Smith 3 years ago Reply

    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 3 years ago Reply

    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

  • WhatLauraLoves 3 years ago Reply

    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 3 years ago Reply

    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

  • Rhian Westbury 3 years ago Reply

    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 3 years ago Reply

    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

  • Ickle Pickle 3 years ago Reply

    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 3 years ago Reply

    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 🙂

  • Sabina Sher 3 years ago Reply

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

    admin 3 years ago Reply

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

  • 3 years ago Reply

    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 3 years ago Reply

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

  • Helen Clark 3 years ago Reply

    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 3 years ago Reply

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

  • Sarah Bailey 3 years ago Reply

    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 3 years ago Reply

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

  • Elizabeth 3 years ago Reply

    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 3 years ago Reply

    Thank you, she has been a star this week x

  • Sam Jeffery 3 years ago Reply

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

    Thank you for sharing!

  • Sam Jeffery 3 years ago Reply

    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 3 years ago Reply

    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

  • Life as Mum 3 years ago Reply

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

    admin 3 years ago Reply

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

  • Melanie Edjourian 3 years ago Reply

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

    admin 3 years ago Reply

    I know hoping I get sent one 🙂 x

  • Kira C 3 years ago Reply

    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 3 years ago Reply

    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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