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Archive for March, 2010

Last week, May was admitted to the hospital for two nights to trial a new seizure medication, pyridoxal-phosphate (or, PP, as I will now call it) to replace pyridoxine. They are both Vitamin B6, just in different forms.

Some babies react badly to PP.  They “forget” to breath. They pass out. They don’t wake up. They require resuscitation.

Just in case, we waited for a bed to become available in the High Dependency Unit, the most critical of rooms in the children’s ward. Unfortunately, while we waited for this bed, her seizures increased dramatically. By the time she was admitted, May was up to three seizures every five minutes.

I should add that, while disturbing to me and distressing to May, none of May’s neurologists thought her seizures were causing her further injury.

Regardless, my frustration and anxiety grew as May’s seizures increased and she still wasn’t admitted. But, once on the ward, I saw there were only eight beds in the whole unit. On one side of us, was a ten-year old boy whose skull was opened in an operation two days previous. (“It was very interesting poking around in your skull!” a chipper doctor said to him.) On the other, was a teenage boy who’d clearly been in some kind of accident. His legs were held together by metal pins, half his hair was shaved off and periodically staff used a suction to clear his throat.

To our relief, once the PP was given, May didn’t have a bad reaction. Actually, she didn’t have a reaction at all – good or bad. The seizures continued. Bouncing also continued unabated. Bouncing – the ultimate barometer of health.

PP has been the most unpleasant to administer of all her drugs. It is powder that doesn’t dissolve in water or milk. We have to give it to her in food. Instantly, PP turns all food bright yellow (try washing that baby drool out of clothes) and rancid. Four times a day we did this. Feeding times lengthened from 30 minutes to almost two hours. PP comes in no other form.

After several days, May’s new SALT received a panicked “May’s not eating because we have to feed her this revolting medicine in food four times a day!” call. After referring to the pharmacist’s guidelines, she advised I pour half the powder on a spoon and cover it with chocolate sauce or jam without mixing it in.

Four spoonfuls of apricot jam – and only five minutes later – the medicine was gone. May was not distressed in the least. Normal service resumed.

We are five days further on in the trial now. May’s seizures are coming once an hour. Every day, for the last three days, they halved. And, good riddance.

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Or, maybe I should say, knocking – very light, easily knocked – things over.

Continuing May’s work with her hands, arms and sight, I’m focusing this week on her reaching forward to touch things.

My sister inspired me. She bought May a stack of soft, light blocks as a gift. I have to admit, when I receive gifts like this, my heart clenches a bit. How much would I love May to stack blocks? But, even though I am so determined to stimulate May, sometimes I am also blind to the possibilities for her.

In the States, my sister piled the blocks on top of one another and sat May in front of them. With her two-year old daughter cheering alongside her, she encouraged May to knock them over, “Come on May! You can do it!”

I feel so sad at these moments. But, there is something arrogant about that; the idea that I know what May can and can not do, and other people are deluded.

My sister was very patient. She encouraged. She waited. Her daughter thrilled with the suspense. And then, May lifted an arm up, only a couple of inches, but she lifted it up and a little forward and a block fell down.

We all yelped with excitement! May heard us and squealed with happiness in response!

All week, I’ve noticed May using her left hand and left arm more. Lifting it to her mouth. Lifting it to my mouth. Touching my wrist while I feed her.

Tonight, I brought those blocks out and watched her knock them down. Okay, she isn’t a master yet, but I think she may be learning a trick or two from my sister.

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There is so much a baby can not tell her parents or doctors. Can she hear? Taste? Can she recognize her mother’s smell or her father’s beard chaffing her face?

In the hospital, we were certain May could see. She seemed to scan the room with interest and focus on objects. In later months, closer observations revealed that May did have a visual impairment. Besides the stiffness running down her shoulders through her hands, her inability to see became one of the most significant of her disabilities.

May seemed to fix, but could not follow. She didn’t, still doesn’t, recognize my face when I peer over her bed in the morning. She reacted to lights switched on or off, but not objects.

To a casual observer, she appeared curious about her surroundings, her eyes searching rooms and sticking to points of interest. But, we knew better.

For months, I’ve been waiting for a referral to a paediatric opthamologist. I’m still waiting. It was approved, but no appointment letter arrived. That, and a lack of relevant information by so-called experts, namely the government, has meant I’m basically on my own.

Being the expert, when your serious lack of knowledge means your child may not gain the capacity for sight, is a lot of pressure. For months, I sat in dark rooms or the back of the car with May during long journeys, with glowing plastic worms, hand mirrors, sticks with balls that light up on the end, anything really that would attract my daughter’s very weak vision.

Then, yesterday in a sensory room, I saw May see. I watched her reflection in a mirror while she sat in someone else’s lap. She gazed up, transfixed, on a tube filled with water and flowing with colored lights and bubbles. I watched her eyes as they tracked the bubbles up the tube. I watched when the color changed and she thrilled at the next one.

The tube makes no sound so I know it was the colour, the lights and the tiny bubbles she was watching. Her therapists witnessed the event with the same awe I did; though they didn’t cry, like I did.

My daughter May can see.

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May and the Small Steps School for Parents are inspiring people young and old to get off their behinds!

My friend Kate has mobilized her form group (that’s homeroom for you Americans) to raise money for May’s school. Katie was one of the first people to meet May back when she was in her incubator in the Neonatal Intensive Care room. She visited me while I was still in the hospital, bringing me a survival kit of girlie magazines and books, not to mention herself. She has been an incredible support and is obviously passing on those traits to her students.

If you are feeling left out, unable to fly a thousand miles to buy a cupcake from Kate’s form, do not fear! You too can donate to May’s future at Small Steps via www.justgiving.com/sianbiddlecombe. My friend Sian is running a 5K and wants to raise £1000 for each kilometer. For me, running up the stairs is difficult, so I commend Sian and her ambitious goal!

Small Steps is an incredible organization, one I am very proud to be a part of. At some point, May will stop crying and pooing in class and be thrilled to be a pupil there too!

Thank you in advance for your generous donations!

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Let the jet lag begin.

We are back in London. Our flight was fairly uneventful, save May projectile vomiting an entire bottle of milk into the aisle, and me showing more signs of foot in mouth disease.

Two lovely air hostesses approached me on the plane to see if I needed anything. May ceased bouncing momentarily as she had the shakes.

One hostess said in a cutsie baby voice, “Oh! Poor thing do you have the hiccups?” and then when it reverberated on May’s face in tiny, repetitive spasms, she asked me, “Is she cold?”

“No,” I said, “she is having a seizure.” Nice work Mama. It just came out. Of course, they didn’t know what to say. Thankfully, they weren’t scared off and instead checked on me several times during the flight, bringing me cups of tea and telling me what a good mother I was.

On the flight I played a lot of hand games with May, something I have been increasingly doing since the physio suggested ‘Row Row Row Your Boat’ a couple of weeks back. I try to sit May for most songs now and use her hands and arms to lean forward to pat her knees or touch the ground side to side. In all cases, I support May to hold her own weight into her arms.

She is improving and can now hold the side to side position for several seconds. I think sitting and using these positions is also helping her become more mobile in her arms and hands. She seems to push against me more, either to initiate a bounce or to move in a particular direction.

But, as usual, I’m not sure if it is all in my head or not. It is a pretty subtle change and I’ll have to wait to see if she shows more visible improvements.

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I’m in Michigan on one last hurrah before I start work at the end of the month. As it is a month before May’s first birthday, the celebrations are starting early. I wanted to include my family and this seemed like the ideal situation – even if she has just over a month to go before her real big day.

I’ll probably write a bit more about this trip (and my last few weeks of maternity leave – sob!) but I wanted to post a couple of photos of the celebrations. Note the cake – handmade by Grandma! It’s a banana cake for our little monkey.

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Watch the Amazing Half-Brained Baby Sit! Incredible Feats! Skills that Defy Belief!

I feel like the circus is back in town when I make announcements about May’s progress.

May can sit with zero support from Mama! She manages about ten seconds before toppling over to one side or the other. In the photo below, she is even using her hands and arms to support herself – a totally new strength due to our discovery that bouncing works on Mama.

This milestone is also related to the physio’s two new sitting exercises. When we place May on her back or lift her up, we put her hand down to force her to bear weight through that arm, demonstrating the process to her. Also, we sing the classic ‘Row, Row, Row Your Boat’ except May is in a sitting position leaning side to side instead of rowing backwards and forwards. May loves this. I thought she’d hate it, but I think she sees it as a new way to rock.

Also, Small Steps has helped enormously. Small Steps is all about teaching children independence, so from the first day, May had to sit, for many songs and activities. Whereas I may have cuddled May while singing or laid her down to play with a toy, for the first third of the lesson – about 40 minutes – May sits. This gave me the confidence to do more sitting with May at home and I’ve seen a huge improvement since we started with them.

The school’s full name is Small Steps School for Parents, a name that I understand more the longer I attend. Besides teaching me to help May gain her independence, this week they held a lecture for parents on coping strategies. I’m not sure what was better for my emotional well-being: hearing that other parents grieved and felt the same anxieties I do, or just leaving the house at night to spend a few hours in adult company. Both were wonderful.

If you live in the UK:

Remember, for those of you too lazy leave your house to shop (that is me, all the time), you can help Small Steps every time you make a purchase by shopping at www.buy.at/smallsteps. The link permanently attached to my right sidebar.

Going on holiday? Expedia and hotels.com are on there.

Need entertainment? Amazon, play.com and HMV are on there.

Want to auction off your spouse? Ebay is on there.

Everything is on there. Sky Plus. Kiddiecare. Superdrug. Next.

AND – many of the shops give exclusive discounts on the site. Total guilt-free shopping. Break the bank and help a wonderful school.

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