Archive | July, 2013

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.



Today was a good day and I will take it!



I can see, I can see, I can see!

14 Jul

The feeling is wonderful, to be able to see after a week of double vision is simply brilliant! I don’t even care that much that my smile is still elusive. Especially since my beautiful husband went and bought me this:


Well done babe! I love it and I thank you enormously.

The three day treatment is now finished, all went fine. I am back on my tablets for a few more weeks. Thank you so much to everyone for all your support – driving, looking after children, flowers etc, so very appreciated.

Now let that be enough about me and back to the real star of the show, Miss Tilda who remains a smiling superhero and will be very happy to be back at school tomorrow amongst her friends and wonderful teachers.

Much love


Laughter, relief and smiling on the inside

12 Jul

My diagnosis has been confirmed as sarcoidosis and whilst this is not something that I particularly want or need in my life, the relief that it is not lymphoma is palpable. My symptoms are somewhat debilitating at the moment, double vision means I am unable to drive so I start a 3 day course of iv steroids today to try and kick start the recovery process. I will continue with daily tablets for a month or so and will have another MRI to check how things are progressing. I believe that although there is no cure for sarcoidosis, it will be something that can be managed.

Apart from not being able to see particularly well, the other thing I am missing the most is being able to smile. Something I have always taken for granted. With one side of my face frozen, my current smile is more like a grimace. As I was walking the other day and couldn’t smile at a person coming the other way, it struck me that they perhaps would simply presume I was rude or uninterested. How easy it is to make presumptions about people. I thought about making a tshirt that said
‘I’m smiling on the inside!’

Whether it is the steroids or not, I have indeed been feeling pretty perky considering! It helps that my beautiful Tilda is chock a block full of smiles at the moment.



And we are seeing laughter everyday.

I can also smile on the inside because we continue to be surrounded by such beautiful friends and family. A huge shout out to the wonderful ReVaMPed for raising $500 for TeamTilda with a mums and bubs photography session. To the very talented Ruth Magree and the very organised Liz Jarvis, thank you so much!!
Thank you also to my wonderful parents for being an amazing support during this rather tumultuous time.
I feel confident that now we have a firm diagnosis and a treatment plan, things are on the up!


July already

2 Jul

This year is just flying, I can’t believe it is already July. My apologies for the lack of updates recently. Unfortunately, I have been dealing with my own health issues. My Bell’s Palsy incident turned out to be not quite so straightforward.  After visits to the gp and neurologist as well as blood tests, further MRI’s and CT scans, it seems that I have something called Neurosarcoidosis which has manifested in some facial numbness and further palsy. It has all been rather annoying to be honest but after a final test yesterday – I had a bronchoscopy to test my lymph nodes – we should have a firm diagnosis by the middle of next week. In the meantime, I have already started the treatment of steroids and hope to have my symptoms lessen in the next week or so. I am expecting, as a result of the steroids, to get fat and surly and am quite looking forward to using them as an excuse for any bad behaviour!

Certainly my last few weeks of tests and being poked and prodded made me once again look at Matilda with awe and pride. The amount of procedures that she has endured over the last few years have been far too many for a small child and she has endured it all with such bravery. This fairy warrior makes makes me proud every single day.

School holidays are upon us and while we are attempting to get Maggie’s night sleeping sorted, we are also trying to keep Tilda stimulated and happy. Those lovely folk at Eastern Palliative care organised for a music therapist to come and visit her last Tuesday and although she was somewhat snoozy, she did look as though she was enjoying herself and certainly Maggie had a ball playing with some maraccas! She will come again next Tuesday and we will try and make sure Tilda is a little more alert!

We were also fortunate enough to get some last minute respite at VSK. It worked out really well while I had my procedure yesterday. We have been in to visit her each day and she is having a wonderful time. When we went in yesterday, they had a mini petting zoo and she was covered in baby animals!

Tilda at VSK with baby animals

And today when we saw her, she was full of smiles.

Tilda smiling at VSK

We will pick her up tomorrow morning and I look forward to having our family together again.

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