On the fifteenth of May, in the Jungle of Nool..

13 Jul

In the heat of the day, in the cool of the pool…

So begins Horton Hears A Who, Matilda’s all time favorite book. Since she was about 2 years old, I must have read this book to her a thousand times or more and now have the dubious talent of knowing it off by heart. The first half anyway, as it was a very useful book for putting her to sleep!

She hasn’t shown a lot of interest in hearing Horton for a while now but in the last few days, my talent for reciting it has come in quite handy. Her sleep of late, has been shocking. We are not quite sure what is going on but she has taken to waking every 1 – 2 hours, moaning softly to herself, not entirely awake but certainly not asleep. There has been no comforting her and it was getting increasingly frustrating. It was only out of desperation, that the words “On the fifteenth of May, in the Jungle of Nool..”came back to me but they have proven to be just the ticket. So now, I am able to quietly recite it to her, half asleep myself and she settles down pretty quickly.

The vomiting has come and gone and come back again but we have learnt to manage it. It is all about controlling the timing and rate with a bit of finger crossing thrown in for good measure. We did have a slight crisis on Sunday night when her new Mic-key button completely came out! I was transferring her from the living room to her bedroom and she still had her tube attached which got caught on her chair. It pulled the whole thing out, much to all of our shock and surprise. We taped some gauze over the hole and rushed down to the Children’s hospital to get it put back in. Thankfully, we were seen straight away but in the hour that the button had been out, the hole in her stomach had already started to close over and it took some coaxing to get it back in place. This is a very good reason for us to learn how to do it ourselves which we will do as soon as possible. Still, it was the quickest in and out at the hospital that we have ever had and we have had no problems with it since.

Today was the live Dora show!! Tilda and I and my Batten peeps, Nicole and Jack all went along to Her Majesty’s Theatre with hoards of other Dora loving small people. I had booked us a couple of wheelchair seats so that Jack and Tilda could be comfortable. Unfortunately, they weren’t next to each other (apparently, people in wheelchairs don’t have friends in wheelchairs) but nevertheless, an excellent time was had by all. Well, Jack and Tilda anyway. Nicole and I tolerated the show but enjoyed watching our small ones love it.

Tilda wanted to dance, had a jump around, a short snooze and a little vomit just to finish things off. It was lovely to see her happy.

She hadn’t been for a while there and that always sends me into spirals of despair. I hang on to her happiness as the only good thing in this shit-house situation. When she goes through a period of unhappiness (which on reflection, she is 100% entitled to), I imagine the worst – that I will never see her smile again but so far, she always comes out of it and blows me away with her resilience and never ending good nature. Even in the middle of a vomiting episode one night, I was able to get a giggle out of her.

What a champion.


9 Responses to “On the fifteenth of May, in the Jungle of Nool..”

  1. Helen F July 13, 2012 at 7:32 pm #

    what a gorgeous photo of you guys, and glad to hear tilda rocked it out at Dora. I hope tilda’s sleep improves soon, Horton is the best and I hope he keeps her sleeping soundly! lots of love to you all xxx

  2. Naomi Toots July 13, 2012 at 7:32 pm #

    Tilda must have inherited her fabulously good humour from her parents xx

  3. Nancy Morrison July 13, 2012 at 8:07 pm #

    yes CHAMPION! is the word that comes to my mind too…

  4. JessB (Kate's friend) July 13, 2012 at 11:03 pm #

    Oh man, I’m so happy to hear how Horton is helping you both. I truly belive that books are the answer to almost everything, so this is just more proof!

    And how fantastic that Tilda had such a good time at Dora! I’ll never forget going to the Wiggles concert with my little sister – we were ostensibly there for her, but I got so into it!!! Oh, Blue Wiggle, be still my heart…

    Anyway, I don’t know Dora at all, but Tilda certainly looks entranced, so I’m really glad that you were able to go.

  5. cally berryman July 14, 2012 at 8:28 am #

    Thank you for the video clip and also brilliant photo.
    Dora, Horton all part of Tilda’s amazing journey.
    We are also on this journey with you three- soon four.
    Love Cally Xx

  6. Anne Bunting July 15, 2012 at 2:27 pm #

    The photo says it all – one adorable little girl and 2 doting parents who are doing everything possible to make her life as happy as possible – champion parents! Hope the sleeping improves and that you are able to get some rest for yourself Laura. lots of love Anne

  7. Juliet July 16, 2012 at 8:49 am #

    I am so glad you made it to Dora and that Tilda had such a good time. Thank goodness for prompt hospital attention, too! Tilda’s resilient sunniness is wonderful. Long may it last, and it proves what terrific genes she got as well as the shitty Batten ones.

  8. Carole and Garry Laird July 16, 2012 at 10:54 am #

    A little champion indeed, as are you! Lovely photo of you all.

  9. Didi July 21, 2012 at 6:18 am #

    My dear Laura glad to hear Tilda had a wonderful time watching Dora with her friend Jake. Children are so wonderfully resilient.Loved to see that beautiful picture of the three of you with Tilda smiling.Glad to hear that Horton has been working.

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