Medical Records

Why I bottle-fed my daughter and don’t regret it

Posted on Jan 28, 2015 | 1 comment

Why I bottle-fed my daughter and don’t regret it

My breastfeeding battle lasted five weeks. “Battle” is the delicate way to describe it. The first five weeks of my daughter’s life, all spent in the neonatal intensive care unit at our local hospital. It was hard. I can’t deny that. And it was all because of breastfeeding. May was born brain-damged and even that she could suck was a victory. The breastfeeding team in the hospital were very supportive. They visited me every day, anytime I needed them. My daughter seemed to be making progress, but she was still dependent on tube...

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Why I love my half-brained baby

Posted on Dec 1, 2014 | 6 comments

Why I love my half-brained baby

Praise be all parents who lovingly pack a hospital bag for their child knowing they will be wheeled into surgery the next day. On Sunday night, I packed up my daughter’s clothes and nappies and all the essentials — plus her Minnie Mouse pillow and treasured, baby blanket — for her hip surgery the following day. Finally, I packed her favourite toy, a monkey music toy. On the bottom, I wrote in big letters “Property of May”. Last time she had surgery, someone took her monkey toy and placed it in the black hole of the children’s toy room in the ward. I panicked. That toy is not just my daughter’s favourite; it is her best friend, her comforter, her joy, her connection to the world. May is five and she is brain-damaged. She has very little cognitive or physical abilities. This surgery is her second this year and won’t be the last she needs to help her growing body because she doesn’t move or support herself in any of the ways another child would to develop normally. And, that breaks my heart. But, it’s not the whole picture. May was born this way. In the days after her birth, the shock of this situation was one I found difficult to get past. I thought surgeries like this would define our life — that we would be in and out of hospitals constantly. And if not hospitals, than therapists’ rooms or dieticians’ clinics or doctors’ surgeries. At first it felt like that. Now, our lives have settled into routines and the shock of her brain injuries are long past us. May’s medical needs are far less than we originally imagined. Instead, we make a point of enjoying our lives. After all, those homemade chocolate chip cookies aren’t going to make themselves. It would be easy for my mindset to remain at my daughter’s bedside in the hospital. But, I want to be where those warm cookies are. We try to focus on what May can do, and what she does enjoy. Ice cream and cuddles and long drives in the car. She loves Julia Donaldson books (she was the witch from Room on the Broom for Halloween). She loves Bob Dylan. She loves Minnie Mouse. And she loves her little brother (when he isn’t driving her crazy). May loves music and she’s brought it into our lives. She and her daddy spend hours singing songs together. I take her to see the London Symphony Orchestra and for walks in the park because she loves birdsong too. Her laugh is infectious. She sticks out the tip of her tongue when she is concentrating and it is completely adorable. Why not focus on these things? Why focus on surgeries and developmental delay? On Sunday night, I placed May’s monkey toy in her hospital bag. In a world where I can control little of my daughter’s condition, I can control this. I can ensure that when she wakes from surgery, that ratty monkey toy is there by her side to cheer her up. Just like she brings joy to all of us....

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800 seizures a day: our epilepsy story

Posted on Nov 14, 2014 | 3 comments

800 seizures a day: our epilepsy story

This week on the Firefly Garden, bloggers from around the world are sharing stories about their children and epilepsy. I suppose our story makes for pretty grim reading. But years later, with May’s seizures down to 1 to 2 a day and causing her very little distress, we feel it is a triumph. Here is the post and make sure to click on the links at the bottom to read other parents’ stories: My daughter, May, was born with a severe brain injury. She had seizures every day, from birth. She has taken, at various points, anti-seizure medications including Phenobarbital, vitamin B6 (Pyridoxine), Pyridoxial Phosphate, Topiramate, Sodium Valporate, Lamotrigine and Clobzam. The last four she is still on every day, twice a day. Even with those drugs, May still has seizures at least once or twice a day. But, when she was a baby, they were as frequent as three times every five minutes. That is 864 every day. Did I just write that? May had over 800 seizures a day? While you mull over those numbers, consider this: those were only the ones we saw. Some seizures don’t manifest themselves physically. It is a horrible thing to say, but May’s seizures were so frequent when she was a baby and toddler I’d discuss them as casually as the weather. People would stop to ask if she was shaking from cold or fear, and I’d respond, “Oh, no need to worry, it’s only a seizure.” They looked at me like I was insane. Most asked if they should call for medical assistance. “No, it’s fine,” I’d say. It’s a wonder no one called Social Services on us. 864 seizures a day. And yet, we never experienced any of the torment other children and their parents do: unconsciousness, urgent administering of emergency medicine, ambulances and hospital stays. At first they manifested themselves in a twitching of her arms and facial muscles – usually she’d continue on as if they’d never happened. If she was laughing when she started, she giggled through it. The doctors didn’t think the seizures would damage her brain any further. But, the seizures did interrupt activity and so we were told they could hurt her long-term development. So, how did we get from 864 seizures a day to 1 or 2? In short: medication. The long story: Read more at the Firefly Garden… And for more stories about epilepsy at the Firefly Garden click below: Sebastian’s journey with epilepsy Epilepsy: The Forest...

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A toothy tale of incompetence and negligence

Posted on Sep 9, 2014 | 6 comments

A toothy tale of incompetence and negligence

May was just wheeled into surgery. I’m sat amongst the other parents awaiting our children’s fate. I’ve said it before, but praise be all parents who pack a bag for their child to take them – not on holiday – but to the hospital where someone will drug them and cut them open with a knife.  

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Retrieved from the post office today…

Posted on May 1, 2014 | 0 comments

Retrieved from the post office today…

Retrieved from the post office today: one package too large for the slot in my door addressed to May. A late birthday gift? No. Six nappies. May turned five a week ago. That is one year since she was eligible for free nappies (AKA diapers for my American friends). A year of nappies we have purchased for May, at our expense – and in return, SIX. Children in the UK who cannot be potty trained receive free nappies on the NHS once they turn four. And so, I find myself with six nappies. For the past year, I’ve been begging for… six nappies. I should add the package, which I thought was a gift – and I suppose many people would be grateful to receive as a gift (hello again, my American friends) – was picked up today, but arrived a week ago and we’ve had none since. At my conservative calculations (5 x nappies/day for a year = 1,780 nappies) the government owes us approximately: £350 ($600). Which is no small amount. Not to mention we have no idea when we will receive more. Are we meant to reuse these disposable nappies? I’m just...

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