Living with Cerebral Palsy 🍋🍋

Monday, 11 January 2010

Alder Hey....

Awful visit. Took 2 hours to get there, so Elin was in a right state by the time we did. Hyperventilating and lathered in sweat. She barely had time to recover before we saw the ENT specialist who was very lovely, but shocked at the state of her breathing (it was particularly bad, I have to say, on account of the panic-stricken long car journey ). Had to go through the birth story again (never fun) and then he had a quick look at her. He said it must be very 'worrying' for us that her breathing is so bad. We pointed out its funny what you get used to. I am only aware of it now in public places when I see other people staring. Anyway, he listened to her chest and thankfully- a little positivity- says that despite sounding awful, she is actually getting a lot of air into her lungs. He is going to make another appointment for us where he will put her under a general and take a good look, probably remove her adanoids if they are enlarged. He says he has seen kids like Elin before and sometimes there's nothing you can do to help. Sometimes the brain damage is so severe that the brain simply isn't sending clear enough signals to the passageways to enable her to breathe correctly. He fears she may also suffer from sleep apnea. This is when you stop breathing in your sleep for small periods, then it wakes you up. He thinks this is why she wakes up at least twice a night. Great. Not at all worrying, then. Im sure that little nugget of information will help my insomnia. In the car on the way home, despite us trying some sedation to avoid a repeat of the journey there, Elin does not go to sleep, gets extremely stressed and starts fitting. Try going down the busy carriageways between Liverpool and wrexham in bad weather and watch your baby strapped into her car seat having fits. Do you take her out and hold her despite the heavy traffic? Or stick to safety first and leave her in her seat??? I did a bit of both, feeling sick with guilt, worry and frustration. The minute we take her out of the car at home and I am preparing to medicate her, she relaxes, like a wet rag doll and sleeps on the sofa for two hours where she still is now. Sometimes I feel like I just can't take any more and today is one of those days.I hate this, I hate it. I hate it.


  1. Hey Ruth, sorry to hear all the bad news, can't imagine how awful the car journeys must be.

    You're being so brave to talk about it as honestly and frankly as you do, I appreciate it and i'm sure others do too.

    Love to you and the rest of the clan.

  2. I agree with my better half, you and and yours are doing such an amazing job just holding on there let alone the way you love and care for Elin.

    It all must be so frightening and living on edge must wear you out constantly. From my understanding of sleep apnea, Elin waking is a good sign that everything is working, and her head telling her to wake up and breathe properly.

    We love you. I think I may need to send you some chocolate! :0) xx

  3. Thanks you two -you are so kind. I appreciate how much you think of us all the time. Much love xxx


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