Holding a steady course

17 Oct

Back to school, back to normal routines and Tilda is doing well. I am always kind of hesitant to post about the run of good days because I don’t want to jinx it! However, vomit-free and smiley is something to be celebrated! We have also managed to increase her food intake to 500ml (750 calories) a day without any adverse effects – I am hoping by the time we have our next catch up with the pediatrician, this might translate into some much needed weight gain.

The last appointment we had, brought some not entirely unexpected information but certainly information I hadn’t begun to think about. Part of this horrible disease is that it can cause muscle contractures, particularly in the ankles and wrists.  I had been noticing that Tilda’s right hand now seems to stay closed and bent backwards.

And when the pediatrician tested her ankles, she noticed that her right one was definitely losing its flexibility.  She has recommended both AFO’s and hand braces. The hand braces, I am ok with and think that she won’t mind too much – they won’t be something that she wears all the time but perhaps just overnight. In regards to the AFO’s, however, I am not looking forward to either the process of getting her feet cast or having to make her wear them. I foresee a bit of a battle. Which did lead me to ask the question whether it was worth it? When posed to the Batten community, there was a mixed response. Many of the parents had tried for a while and then decided against using them because their child wasn’t happy. Other parents have seen a real benefit. The whole thing leads back to the eternal mantra of ‘quality of life’. Will wearing the AFO’s for a small amount of time throughout the day ultimately assist in helping reduce painful muscle contractures thus leading to a better ‘quality of life’?? Or will the AFO’s be so unbearable that the time spent in them is so horrible that it negates any positivity that they may provide??

I don’t know.

At the moment, we have an appointment booked to get her feet cast on the 13th November. I will take her and see what happens.

Pregnancy Update

It occurred to me that since announcing Matilda’s baby sister was healthy, I haven’t mentioned much about my pregnancy. All is going very well – I am a gigantic ball of baby

but apart from feeling a bit tired and rather ungainly, I am pretty good! Only 9 weeks to go, our due date is the 22nd December but I am very much hoping that I go a little bit earlier than that. I am actually aiming for 12/12/12 because how cool would that be?!

Impending birth is always a time for a bit of navel gazing (especially now that said navel is now an outie). I recall how around this time last year, we were in a headspin because we couldn’t work out whether we even wanted to go down the path of trying for another child. Now that she is nearly here, along with great excitement and joy comes a fair amount of terror. Understandably so, I realise. Many of the concerns I have, I think I would have even if Tilda did not have Batten Disease.

Most of all, I am scared about ‘Parenting” again. We don’t parent Matilda. Not really. Not since she was able to talk and interact with us. We are her carers, her providers, her nurturers. I admit that I have shouted at Tilda, even in the last week, realising even as I did it,  that shouting at her is very much like shouting at a butterfly. Not very effective. Dealing with tantrums, disciplining, guiding  – these are all the things that we once  did and will have to relearn. But oh, am I ever excited at the thought that someone will call me Mama once again.

Bring it on!



8 Responses to “Holding a steady course”

  1. Nancy Morrison October 17, 2012 at 8:13 pm #

    very sweet! MAMA!!!!

  2. Carole and Garry Laird October 17, 2012 at 8:35 pm #

    Go Laura!

  3. Jo Weller October 17, 2012 at 8:40 pm #

    Bring it on indeed! You’re such a spunk my dear xxx

  4. cally berryman October 17, 2012 at 8:45 pm #

    I share your concern about the braces.
    If it is upsetting Tilda, why put her through the pain?
    And you are indeed one gorgeous, lovely ball of baby.
    Very much so, thank goodness.
    Hope you get the date 12/ 12/12 – sounds very cool.

    Love you guys xx

  5. treen October 17, 2012 at 9:26 pm #

    You are such a natural mum all that ‘stuff’ will come back to you in an instant – and babies are such good teachers- she’ll have you and reg up to speed in no time!! Love to you all, speak soon… Treen

  6. Juliet October 18, 2012 at 8:36 am #

    You’re looking great and I am sure it’ll all come flooding back to you, however exhausted you may be. All my sympathy about the AFO dilemma… I guess it’s probably a question of try it and see? Best of luck with 12/12/12!

  7. Di White October 19, 2012 at 9:18 am #

    Apart from everything else I know and love about you Laura, I wish I could write as well. I always feel that we’re travelling along with you and Simon andTilda, and baby.12.12.12 is definitely a date to aim for and will take top prize from Alexander Black born 20 past 8 on the 20th,of the 8th, 2008. I thought that was pretty cool too. XXXx

  8. Anne Bunting October 20, 2012 at 7:40 pm #

    It’s natural to doubt yourself but I’m sure everyone knows you will the best Mama in the world to your new baby as you are to Tilda. Good luck with the braces decision – its a hard one either way. You’re looking fantastic and fingers, toes and everything else are crossed for the 12th. Love always

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