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    #16
    Hi Nana Dina!

    Many congratulations on the arrival of your granddaughter - I expect you can't wait to meet her at the weekend!

    A new baby is such a joy and can be a wonderful ray of sunshine, especially during difficult times. I hope you have a lovely weekend packed full of special moments with your beautiful granddaughter.

    Love and best wishes to you and your family,
    Kayleigh x
    Last edited by Kayleigh; 26 July 2019, 15:35.

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      #17
      Ellie, you are so kind and generous with your knowledge. Thank you so much.

      I don't have a problem with end of life discussions: my sons and I talk freely about it. They even told me which dates I wasn't allowed to die! We are very lucky that we are able to air the subject. In fact, I have told my sons and my partner that they should discuss my funeral this weekend, when they will all be here.

      As you say, it is better to leave researching the ADRT until Monday but I would be grateful for any help you are able to give. I don't mind whether we do it in this thread or by private messages.
      Dina

      Trying to keep positive, but not always managing.

      Comment


        #18
        Hi Dina;

        It might be good to have a thread on it, if people know what it is about in the heading then they don't have to look.

        It's good that you can talk about it.

        Love Terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

        Comment


          #19
          Originally posted by Kayleigh View Post
          Hi Nana Dina!

          Many congratulations on the arrival of your granddaughter - I expect you can't wait to meet her at the weekend!

          A new baby is such a joy and can be a wonderful ray of sunshine, especially during difficult times. I hope you have a lovely weekend packed full of special moments with your beautiful granddaughter.

          Love and best wishes to you and your family,
          Kayleigh x
          Thanks, Kayleigh.

          This evening has been a mad flurry of telephone calls and messages sorting out last minute arrangements. I had planned to meet them at the tram station but, unfortunately, the forecast is for heavy rain. Not only that but they are travelling on an earlier train than anticipated so will be arriving before my carers are likely to have finished. I shall have to tell the carers to work at double speed!
          Dina

          Trying to keep positive, but not always managing.

          Comment


            #20
            Originally posted by Terry View Post
            Hi Dina;

            It might be good to have a thread on it, if people know what it is about in the heading then they don't have to look.

            It's good that you can talk about it.

            Love Terry
            Hi Terry,

            That's fine. I'll start a new thread.

            And, yes, we are very lucky that we are able to talk openly about end of life.
            Dina

            Trying to keep positive, but not always managing.

            Comment


              #21
              Congratulations on the granddaughter Dina

              The physios who deal with the ventilator and the cough assist machines at Wythenshawe are all good. So are most of the nursing staff.
              You will have a chest x-ray within the first day or so
              They also will give a nightly anti-coagulation injection in your tummy
              There is a Subway, an M&S and a WH Smiths not far from the ward - Christine brought me daily ice creams and coca-cola to supplement the diet
              Last edited by Dis1960; 27 July 2019, 07:47. Reason: Coca-cola

              Comment


                #22
                Originally posted by Dis1960 View Post
                Congratulations on the granddaughter Dina

                The physios who deal with the ventilator and the cough assist machines at Wythenshawe are all good. So are most of the nursing staff.
                You will have a chest x-ray within the first day or so
                They also will give a nightly anti-coagulation injection in your tummy
                There is a Subway, an M&S and a WH Smiths not far from the ward
                Thank you, Douglas.

                Thank you, also, for the heads up about what's likely to happen during my stay. I wonder if they will allow me to self-administer the anti-coagulent, like I did in the Acute Neurology Unit at Salford Royal?
                Dina

                Trying to keep positive, but not always managing.

                Comment


                  #23
                  Originally posted by Gillette View Post
                  Thanks, Kayleigh.

                  This evening has been a mad flurry of telephone calls and messages sorting out last minute arrangements. I had planned to meet them at the tram station but, unfortunately, the forecast is for heavy rain. Not only that but they are travelling on an earlier train than anticipated so will be arriving before my carers are likely to have finished. I shall have to tell the carers to work at double speed!
                  Hi Dina,

                  I hope you enjoyed the weekend with your family staying and meeting your lovely baby granddaughter for the first time. I hope their journeys went smoothly and you all had a great time together.

                  Love Kayleigh x

                  Comment


                    #24
                    Originally posted by Kayleigh View Post
                    Hi Dina,

                    I hope you enjoyed the weekend with your family staying and meeting your lovely baby granddaughter for the first time. I hope their journeys went smoothly and you all had a great time together.

                    Love Kayleigh x
                    Hi Kayleigh,

                    Thank you so much for asking. We had a wonderful weekend. I had literally hours of cuddles, read her some stories (which my son recorded so that he can play them to her to show who I am/was.

                    Their journeys went smoothly except his fiancée left her handbag in the baby changing room and didn't realise until they were on the tube. She went back to Euston but there was no sign of it, nor had it been handed in.
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      #25
                      Hi Dina,

                      It sounds like you and your baby granddaughter had a blissful time getting to know each other at the weekend! Undoubtedly, she would have enjoyed all those cuddles and all that lovely time together as much as you did.

                      From all the love you bless her with and the precious memories you make for her, she will always know that her Nana Dina loves her very much and she will always cherish your everlasting love in her heart.

                      It's such a shame about the handbag and very disappointing that it wasn't handed in. Hopefully nothing of great value was in the bag and it was possible to cancel any credit cards quickly. I'm glad that despite that hic-cup, baby and parents reached you safely and you all had a wonderful weekend.

                      Love Kayleigh x
                      Last edited by Kayleigh; 30 July 2019, 00:36.

                      Comment


                        #26
                        Hi Kayleigh,

                        You have a lovely way with words. Thank you for your comments.

                        As a family we are busy making memories in whichever way we can.
                        Dina

                        Trying to keep positive, but not always managing.

                        Comment


                          #27
                          Hi Dina. Sounds lovely about meeting your new granddaughter with lots of cuddles. Good idea of recording you telling her stories.

                          So sorry about the loss of your future daughter in laws' handbag. I hope that she cancelled her cards quickly and her bank gets on the case.

                          I hope that the young family got home safely.

                          Lynne
                          Last edited by Lynne K; 30 July 2019, 07:40.
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                          I'm staying positive and taking each day as it comes.

                          Comment


                            #28
                            That sounds like a lovely, special weekend for you all Dina (well, apart from the baby-brain handbag incident )

                            Wonderful idea to record you reading her a story!

                            Love Ellie.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #29
                              So glad you had such a beautiful weekend with your new granddaughter, Dina and got lots of cuddles.

                              It sounds so special and it's a great idea to record your story reading, although it must have been very emotive.

                              It's so uplifting when all the family are together and yours sound lovely.. you must be a proud mum and Grandmother!

                              Love Debbie x

                              Comment


                                #30
                                Thanks, Debbie, Ellie and Lynne.

                                I had a telephone call at around 1:00am today saying there was a bed for me at Wythenshawe. I was still in bed so there was a mad panic to get organised in time for the transport at 12:00 noon, except that the ambulance arrived at 11:10am!

                                I have had a couple of practice sessions on the Nippy but I don't have to try it tonight as they are doing a sleep test.

                                I tried the Nippy in two different modes and with various settings. I might have more idea tomorrow. I know that the pressure mode I tolerated best is not suitable for use when I have the PEG fitted.
                                Dina

                                Trying to keep positive, but not always managing.

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