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Archive for August, 2011

Mama Lewis and the Amazing Adventures of the Half-Brained Baby has a new home now. Come visit us at mamalewis.com.

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When I wrote my 100,000 hits post, it was only February of this year. It took almost a year and a half to get there, and now a third of the time to get here.

But, that’s not what I really what I find amazing. 200,000 hits is small potatoes compared to everything else that happened in that short amount of time.

May discovered her mouth. She enjoys making clicking and humming sounds. She spits like a champ. She sings along with us. Her laugh is infectious. I defy anyone to not giggle along with her. What a joy she is!

May’s seizures disappeared. We go weeks without seeing one now. Let me repeat that for those of you new to my blog. We go weeks after almost two years of frequent seizures, at their height over 100/day. To rid herself of these, May had to endure medicine trials. That’s how she learned to spit like a champ.

May learned to sleep through the night. We should win a medal for that.

May moved on to chunky food and put on the pounds! Finally! (And, from this, I learned that my instincts are right. Two fingers to so-called experts who doubt and patronize thoughtful, reflective and informed parents.)

May became more independent. She mastered the Bumbo seat. Which means, she can sit – be it aided. That is an amazing step forward. Not to mention, she LOVES her Bumbo. She also loves her bouncer. In both of these, she will happily play on her own for 20 – 30 minutes at a time.

And, just in time – because she needs to be more independent after the major event of the year. A healthy, baby brother for May!

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After your baby was born, where was the first place you ventured out of the house to?

I’m American. I went to the mall.

Worse, I went directly to the baby store. (I also went to the book store. A girl’s gotta have her fix.)

At the baby store, my husband pulled the stroller up to the elevator doors so we could go upstairs. The doors opened and two women pushing a stroller came out. Nothing unusual in that except the boy in the stroller was wearing his pacifier around his head.

He wasn’t holding it, it was attached to his head by a piece of elastic fabric. “Genius!” I said out loud.

Gareth got in the elevator and I walked off. I left him and the baby on the elevator. I abandoned my newborn baby. I was fixated on one thought: May-teeth-grinding-May-teeth-grinding.

Determined to stop the women, I ran off after them crying, “Excuse me! Excuse me!”

They stopped and turned around. “Your boy. His pacifier.” I wasn’t explaining myself properly. I gestured towards his face. “My daughter, May, grinds her teeth and she can’t hold, she doesn’t know how… and I saw your boy.” I never know how to explain May to complete strangers.

Thankfully, they were both very nice. His mother asked, “Does she have cerebral palsy?”

“Yes,” I said, gratefully.

Turns out Sasha (I hope I have his name right – and, if his mother is reading this, feel free to correct me!) can’t hold his pacifier in his mouth any better than May can. His mother explained that it calms him down and he hates to be without it. She came up with the ingenious idea of tying a bit of elastic band into the holes on the side of the pacifier, wrapping it around his head and TADA!

I can’t promise that May looks as adorable as Sasha did in his. I wish I’d taken a photo of him as a demonstration – he was such a cutie.

May and I are indebted to Sasha’s mother who, like I’ve already said, is a genius. After months of trying to figure out how to stop May from grinding her teeth, Sasha showed me the way. All hail this adorable blondie boy and his mother!

FYI: May uses a Tommy Tippie Xplora Gummy Teether, not a pacifier.

UPDATE: Sasha’s mum, Kate, has been in touch! Not only that, but she has her own blog where you can see a photo of Sasha and read more about him and his adventures. 

 


Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

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Yesterday, I wrote a post ‘What NOT to say to the parents of special care babies‘ on BabyCenter.

This got me thinking… what is the right thing to say?

A week before we took May home from the hospital, my husband and I attended a wedding. At the wedding, pretty much everyone, even the people we didn’t know well, knew that we had a baby in the hospital.

One friend of a friend approached me. He was a parent himself.
He took my hand. “Congratulations and commiserations,” he said to me.

Other people at the wedding were offended on my behalf, but I thought it was honest and touched genuinely on how I felt. I was so grateful that a person didn’t pretend everything was okay. He managed to do so, while at the same time recognizing the love we had for our daughter.

So, instead of being offended, I thanked him and we spoke for a while. Our mutual adoration for our children (and the newly married couple) was our only link, but his decency lasted with me.

I don’t know that everyone would agree that it was the right thing to say, but it worked for me.

What do you think people should say to the parents of a special care baby?

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

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Perhaps you think this blog is to inform you, the reader, of special needs issues, or May’s issues in particular.

OR… maybe my blog should be endless slideshows of my adorable children.

You decide.

In the meantime, enjoy! I call this installment: A face only a mother could love?

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Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

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If I can't see it, I'll eat it!

I will remind everyone reading this that I’m not a doctor since I’m about to explain how vision develops in a baby. (Feel free to correct me.)

There are two aspects of vision: mechanical and cognitive. Mechanical is how the eye moves, focuses on things, etc. Cognitive is how the brain reads, identifies and remembers what you see.

The two are very different and yet they work in conjunction with one another. So, when May went to her first eye appointment (lots of fun, you can read here), the mechanics of her eye were fine, but the nerves that grow at the back of the eye and link the eye to the brain were not developing.

Why not? Because the brain received information from May’s eyes, but the parts that could read that information were, shall we say, unavailable. Children are not born with 20/20 vision. The develop their vision for the first five years of life, so if May’s brain can’t read what she sees, her vision as a whole is effected.

To go a step further, even though the mechanics of May’s eyes worked initially, in order to progress they needed her brain to be registering what they were seeing.

Does that make sense?

I condensed over a year of my own research into four short paragraphs so feel free to be confused. For further reading, I would suggest Cortical Visual Impairment by Christine Roman-Lantzy.

Indulge me for a moment.

This was the single most challenging issue to find any information about. It took me over a year just to find it. I asked every doctor I saw. Every single one, even the ones I respect the most, told me there was nothing I could do. Worse, they had no information to pass on to me. That is how little is known about visual development in babies, let alone brain damaged ones. Furthermore, later I discovered that some of the doctors knew about the Great Ormond Street Hospital Developmental Vision Clinic and didn’t suggest it to me. Once I found it, on my own, they were reluctant to refer me to it.

Why is this?

In every physical way, May has therapy. In every cognitive way, May has none.

Why is this?

I must not be the only parent who is desperate for information to help their brain damaged child develop cognitively. I don’t need to say how important vision is to development.

You can click on the Visual Development link in my right side bar to read about some of the things I’ve been doing with May to improve her vision. And, it is improving – just slowly.

Next month, May goes to the famous Moorfields Eye Hospital to have her vision evaluated (mechanically and cognitively) on the suggestion of the head of the Developmental Vision Clinic at Great Ormond Street Hospital. It would have happened earlier except I had a little issue getting there during the past month. That little issue being a new little baby.

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What are May’s two favorite things (outside of bouncing, of course)?

Bath time and music. Even better in combination.

She loves kicking her feet to the music. She loves to sing along to the tunes. If all therapies were music therapies, May would probably be an Olympic athlete by now. So much so, I’m considering sending May to music therapy sessions starting in September. (Thoughts?)

And so it is, dear reader, that I bring you the third in the occasional series ‘Yes May, but is it art?’

Previously, you found May contemplating Modern Art at the Tate Modern, followed by the Turbine Hall exhibition Ai Weiwei: Sunflower Seeds, also at the Tate Modern (which incidentally closed the day after we visited, coincidence?) In this segment, May passes judgement on the work of that snaggle toothed icon of 70s and 80s Pop, David Bowie.

Rather than go through all of Mr Bowie’s great works – and rest assured, thanks to her father, May has – we will focus on a few choice songs. Personally, I would be quite happy to work through the entirety of ‘Ziggy Stardust’, but neither May nor her father seem to care a whole hell of a lot about my music preferences.

Tonight, during bath time, May and her father rooted through the depths of his music collection. As each song began, May would either express approval (lots of kicking and smiles) or displeasure (squeals of pain).

Yes May, but is it art?

From ‘The Man Who Sold the World’ (1970):

Black Country Rock – Kick! Kick! Kick!

The Man Who Sold the World – Definite signs of displeasure from the first note, turning ugly very quickly.

From “Hunky Dory” (1971) –

Life on Mars – A very fickle May responded to this one badly at first, but five minutes later: Kick! Kick! Kick!

It ain't art, Mr. Bowie.

From ‘The Rise and Fall of Ziggy Stardust and the Spiders from Mars’ (1972) –

Rock N Roll Suicide – Hated it. Perhaps May feels Time shouldn’t take a cigarette and put it in anyone’s mouth because it is a dirty nasty habit. Whatever she thought, it wasn’t positive. She was so upset she almost hurled herself out of her bath chair into the water. Thankfully, Daddy swapped quickly over to ‘Young Americans’ or it may have been the end of our little May.

From ‘Young Americans’ (1975) –

Young Americans – This young American loved it! Is there a better song in all the world?

To sum up: May appreciates the weird, wonderful world of David Bowie, but she thinks he is a bit pretentious. Art it ain’t.

Want to read more from Stacie? Check out her posts on BabyCenter’s Momformation!

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