Day by day living

30 Jul

The days tick by. In two days, it will be August and in just over a month, Tilda will turn 7. After the flurry of the last month, I am very pleased to report that things are happily boring. Matilda continues her good streak of cheeriness and smiles. Maggie is growing bigger by the second and I have my smile back! It is a great relief. I am slightly moon-faced from the steroids (or possibly from using the steroids as a great excuse to pig out on chocolate!) but I can live with that for the moment. Hopefully, I will be able to start weaning after I catch up with my neurologist next week.

This what we do. We live moment to moment and day to day and it is peaceful for the most part. So what does our day by day living look like? Things have changed quite a bit since the last daily routine post I did. Tilda’s needs have changed and of course there is a whole new person to factor in! We are in a fairly good rhythm at the moment but I know that this can change at any time! By either of them!

4:00am – Maggie wakes for a feed. Thankfully, she is normally pretty quick and efficient and goes back to sleep quickly afterwards! Tilda may also wake around this time needing a nappy change or to be rolled over.

7:00am – Both girls wake.

7:00 – 8:30am – Morning Mayhem.

For Tilda – Feed goes on, it runs over an hour and a bit during which time she is in her bed, watching Dora or Maisy. She has her morning meds (50mg Lamictal, 15mg clobozam, 10mg Baclofen, 8ml Epilim, 8ml Domperidone, 1.3ml Glycopyrrolate. Once feed is finished, we let it settle for 10 or so minutes before getting her dressed for school. School bag is packed with notes written in the daily communication book and news recorded on her Step By Step.

For Maggie – nappy change, breakfast (fruit, toast, cheese = mess!), playing on the floor or in her activity chair. My world will change dramatically when she starts to move on her own!

8:30am – Bus arrives to take Tilda to school

9:-00am – 11:00am – Nap for Maggie. Possibly nap for me depending on my night!

11:30am – lunch for Maggie. She is an absolute champion eater which is fantastic. Quite a different experience from when Tilda was a baby. Maggie seems to enjoy pretty much anything and everything so meals are pretty fun at the moment. Messy but fun!

11:30am – 1:30pm – I usually try and get out of the house at this time. Run errands, lunch with friends/family, shopping, go for a walk etc.

1:45pm – Bottle for Maggie

2:00pm – 4:00pm – Nap for Maggie

3:30pm – Tilda arrives home from school. She is very cheery at the moment and comes home with a smile on her face.

3:30 – 5:00pm – We have cuddles in the living room, watch a bit of Dora, read her communication book to see how her day was, listen to the Step by Step. School is going really well – last week,  Tilda received the SuperStar of the Week award!

SuperStar of the Week!

We are very proud of her! When Maggie wakes up at 4, we all have a play in the living room together.

4:45pm – Dinner for Maggie. More mess!

5:00pm – 6:00pm – Evening Mayhem.

For Tilda – she gets settled into her bed with pyjamas on and watches her shows. Once a week, we will give her a bath. It is not an easy task anymore and she doesn’t enjoy it as once she did. Her evening feed goes on and runs for an hour and half.

For Maggie – The Bath, Bottle, Bed routine. Asleep by about 6:00pm most nights.

7:00pm  – Evening meds for Tilda (8ml Epilim, 8ml Domperidone, 20mg Clobozam, 10mg Baclofen, 1.3ml Glycopyrrolate, 2ml Melatonin). Tilda usually falls asleep around 7:30 and has been having a good run of sleeping most of the night through.

7:00pm – 11:00pm Our time! Of course, we are both usually quite knackered and end up on the couch but we have been trying to take turns going out with friends for dinner, drinks, movies etc.

11:-00pm – Maggie wakes for a feed.

And so it continues. It is happily boring and I am boringly content. Weekends are spent trying to catch up with family and friends. I am very conscious of the importance of getting out of the house as much as possible, and like to have places to go. This past weekend we caught up with friends at a local farmers market which was just perfect. Good food, accessible and an outing! These are as big as my dreams are at the moment and I am absolutely fine with that. We look forward to the small things – a weekend away, a dinner out, a catch up with a friend. The minutiae of life can be the building blocks to a good life – a happy life even when you have been given the worst card in the deck. I have my times though when day to day living is very, very hard.  It is hard to try not to have dreams for the future. It is hard to constantly stop yourself from imagining what is to come. Friends talk about travel plans, ideas of where they might want to live next, possibilities and opportunities around every corner. We cannot make plans. A few weeks ahead is about as far as we get.

But I know that to live in each day is a gift and I treasure those small moments because I know that they will be the memories that will sustain me when that blurry, fuzzy future starts to become clearer.

IMG_1287

 

Today was a good day and I will take it!

oxoxox

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10 Responses to “Day by day living”

  1. FiFi July 30, 2013 at 4:30 pm #

    You are beautiful & amazing xoxox

  2. Cally July 30, 2013 at 5:13 pm #

    What a glorious day shared with us.
    As you said the small details of life are stunning in their beauty.
    How superb for Tilda getting such a wonderful award.
    Thank you, we are witness to your joy (and pain) and walk some of the journey with you all. xx

  3. Katrina Varcoe-Cocks July 30, 2013 at 10:12 pm #

    Laura your ability to articulate your thoughts never cease to amaze me. Thanks for sharing. Hope to see you soon. Love to you and your happy girlsxx

  4. kyliesmith318 July 30, 2013 at 10:14 pm #

    We should all be so appreciative. You’re awesome.

  5. Karen Nichols July 30, 2013 at 11:49 pm #

    We love you all and thank you for sharing your days with us. I know it must take a lot of energy to write all this down. May you feel the love that surrounds you.

  6. Danielle July 31, 2013 at 9:48 am #

    Beautiful Tilds! What a clever kid getting the Super Star award.
    The photo of you & Tilds is gorgeous.
    You are an inspiration my beautiful friend. How very blessed I am to have you in my life.
    Big love, Dan x

  7. Irene August 1, 2013 at 8:25 am #

    Its about time you lead a boring life, even if it is a day by day event!
    PS: you are now a red head…I am so impressed LOL

  8. benita crocker August 1, 2013 at 9:20 am #

    Sounds busy Laura!! Enjoy the little stuff xox

  9. Juliet August 1, 2013 at 9:24 am #

    Reading about your day makes me feel exhausted and so proud to know you. I am so glad that Tilda is happy and doing well (and what a marvellous certificate!) It was great to catch up yesterday (thanks for organising it, Kylie!) and to see how well Maggie’s doing. Life will certainly change again when that little one sets off to explore her world on foot. Great to see you back to smiling with both sides of your face. Now you can keep the t-shirt for times when you’re feeling sleep-deprived. Love to you all

  10. Didi August 4, 2013 at 12:03 am #

    Laura my dear friend the way you put your thoughts on paper is quite amazing. You are an amazing person I admire you and your strength. Living day by day is good. Happy to all is going well. Tilda is beautiful and I am glad she’s doing we’ll and is happy. God bless all your family may he continue to give you strength where you need it.

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