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.

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8 Responses to “Smiles and good days”

  1. Nancy Morrison September 21, 2012 at 10:02 pm #

    Good to hear! Has DORA arrived yet? Love, Nancy

    • teamtilda September 21, 2012 at 10:05 pm #

      Oh my goodness, YES!! She arrived today in all her giant splendour! Thank you very much!!! Tilda was a little in awe, I think. 🙂 Xoxo

  2. cally berryman September 22, 2012 at 5:56 am #

    Loved the photos, still has the cheeky grin. I am sorry to hear about the tube problems. Enjoy the school holidays and swimming.

  3. Di White September 22, 2012 at 5:32 pm #

    Apart from everything else you deserve, I think you’re due an honorary medical degree!Glad to read that smiles and good days heavily outweigh the ‘tricky’ ones. Much love Di

  4. Juliet September 24, 2012 at 8:59 am #

    So glad things are going better! Love

  5. Martin Fabinyi September 24, 2012 at 11:20 am #

    So good to hear this news love Martin

  6. Didi September 28, 2012 at 8:45 am #

    I’m sorry I missed her birthday Happy belated birthday miss Tilda! I’m glad all is well now after your little scare. My dear I admire your strength and courage my dear friend hugs and kisses to you and your family

  7. Terri Beggs October 4, 2012 at 11:31 pm #

    A beautiful birthday celebration for a beautiful little girl. So glad things are going well.
    Love Terri & Roger

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