Archive | September, 2012

Smiles and good days

21 Sep

We have had a pretty good run of late. No vomiting, good cheer and a bright-eyed and bushy tailed Tilda.

There have been a couple of turbulent moments though. Last Sunday, in the middle of a family yum cha outing, I accidentally pulled out Tilda’s PEG. Thankfully, the hospital was not too far away but it did mean a mad dash and no more dumplings for me! We got to the hospital and they put it back in with no problem. We definitely do need to learn how to do it ourselves at some point although I think if it happened again in the middle of a lunch outing,
I would still take her into the hospital. Not sure about performing such a procedure in the middle of a Chinese restaurant!

We also had a bit of a scare on Monday. Tilda woke up and was having lots of eye rolling and being very vocal.

It went on all morning so we decided to take her into the hospital. They checked for any infection and couldn’t find anything. They thought that it probably wasn’t seizures because she was able to be distracted and after a thorough check up, sent us home. The eye rolling stopped in the afternoon and apart from a random fever on Wednesday night, she has been fine.

We had a check up with our neurologist yesterday afternoon who was really pleased to see how well Tilda looked. It was the best she has seen her in over a year which is great to hear. As for the eye rolling, I showed her the video and the only way we will be able to know if it was seizures is if we are able to do an EEG if and when it happens again. This is obviously rather tricky but I do have a number to call so that we can go straight in for one. Hopefully it doesn’t happen and we won’t need to but it would be very interesting to know exactly what was going on in her brain during one of these episodes.

School holidays are now upon us and I look forward to making full use of our new wheels and getting Tilda out and about as much as possible.

Swimming will definitely be on the agenda.



Happy Birthday Tilda!!!

10 Sep

Birthdays can be an emotional time. It is too easy to look back on previous celebrations and see how much has changed. It is too easy to wonder how many we have left. But yesterday, we put that aside and simply enjoyed the company of our friends and family and enjoyed feeling the sunshine on our faces. Tilda had a great day with lots of chatting and soaking up the rays. She even had a little snooze on my lap making it necessary for me to simply sit and issue instructions. Genius!

A huge thank you to the lovely Kat for the amazing Dora cake!! And thank you to all the people who came and to all of those who sent through happy birthday messages and texts. The celebrations continued today at school with lots of fuss being made of her. Her school bus rocked up with a Happy Birthday banner and streamers and when she came home, her chair was covered in balloons.

HAPPY BIRTHDAY to our lovely, beautiful, delightful and delicious Tilda!!!!










3 years ago…..

5 Sep

It was three years ago on Monday, the 3rd of September, that this painful, unreal, emotional, rollercoaster of a journey began with that 1st seizure by the side of a pool. I can’t believe it is already three years, I can’t believe it is only three years. One of the most poignant things for me about this date and about Tilda’s upcoming 6th birthday on the 10th September, ┬áis that it means that this battle has now consumed half of her life. Life before seizures, medications, dr appointments, hospital stays and therapies is becoming more and more of a haze.

But there was a life and it is important to remember it.

Tilda and I were very social butterflies over the weekend with the wonderful freedom that having our van brings. We did lots of visiting and enjoying of the beautiful spring sunshine. I think I may have worn her out though as she has gone a bit quiet and lethargic over the last couple of days. I think she has the beginnings of a little cold but I have taken her to the dr and thankfully her chest is clear. She took the day off school today so we have been keeping quiet.

Raffle tickets for our TeamTilda Fundraiser are now ready for purchasing!!

Thank you so much to those who have already bought tickets or taken books to sell. Tickets are $5. If you would like to purchase a ticket, you can email with your details and deposit the money into the TeamTilda account (see the Donate tab). If you think you would be able to sell a book of 20 then email us your address and we will send a book out to you. A huge thank you also to the amazing people who donated the prizes – will you all think it is rigged if I win the trip to Noosa??’

Much love and Happy Springtime to all.


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