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.


8 Responses to “July already”

  1. Jo Weller July 6, 2013 at 6:36 pm #

    So sorry you’ver been in the wars. Can’t wait to see you, fat, surly, whatever! Hugs to you all xxx

  2. Jac July 6, 2013 at 8:22 pm #

    What a pain about your health stuff, but lovely to see tilda so happy!

  3. Margaret Black July 7, 2013 at 3:40 pm #

    Lauly you are amazing. We have been thinking so much about you over the last few weeks and hope you are now over all those invasive experiences. Lots of love to you from Margaret and Bill

  4. Cally July 7, 2013 at 6:25 pm #

    You poor lovely, such a horrible disease to get,on top of everything else.
    (I know about sarcoidosis). Watch the cortisone- it is good and bad.

    Loved the photos and the big bright smile on Tilda.
    The rabbits a joy for her.

    I hope Maggie learns to sleep at night.
    Soon. When she is ready.

    Much love to you all. Love Cally Xx

  5. Terri Beggs July 7, 2013 at 11:49 pm #

    Thinking of you Laura and Smiling Tilly. Strength to you Simon and beautiful Maggie, lots of energy wafting your way.
    Love Terri & Roger

  6. Juliet July 8, 2013 at 8:57 am #

    I do hope your own health problems can be sorted completely and fast! What a marvellous organisation VSK is. Baby animals sound ideal and Tilda is obviously having a ball. What a little warrior!!! All my love

  7. Irene July 8, 2013 at 9:29 am #

    Lots of hugs for you all OOOOOOOOOOOOOOOOOOOO

  8. Anne Bunting July 8, 2013 at 12:32 pm #

    Just when you have Tilda back well and happy, you have to cope with your own illness, treatments etc. It is wonderful that you can get strength from Tilda’s bravery and hopefully once you have a firm diagnosis things will start to pick up – Maggie may even decide to cooperate by sleeping at night. Love always and know you have every right to be as surly as you like without even having to use steroids as an excuse! Anne

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