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Don't insult the half-brained baby!

September 21, 2009 at 21:11

Mama Lewis


For those of you that think there is never anything amusing to be found in the most dire of situations, you’ve come to the wrong blog.

May is delightful. She has endless rolls of chub. She burps like a frat boy. She is an absolute maniac when it comes to bouncing. I skyped my mother last night and she could barely see her granddaughter. She was a blur. Like Superman at full speed.

She also has a disturbing ginger tint to her fuzzy scalp. “Her greatest disability,” my husband called it. It was our first joke about May.

I am not noble enough, not rational enough, not level-headed enough to face this situation with the due respect it deserves 24-hours a day. If I manage to complete a day and look back on it with a smile, it is a triumphant one indeed. Seriously.

First Bite!

September 20, 2009 at 22:08

Mama Lewis


My pronouncement to the SALT, last week, that May was ready for real food, was met with condescending bemusement.

“Um, how old is she?” the SALT asked. Her therapists never say “no”, they always ask a question that will lead you to discover “no” for yourself. She knows how old May is. Her DOB is at the top of everything ever written about her.

Still, I offer, “4 1/2 months.” I somehow manage to answer all these questions-leading-to-no without the same condescending attitude they are asked.

“Well, see, leading research shows that babies should be weaned closer to 6 months.”

I look at May who is currently eating the floor. “I think she is ready,” I say.

“Hmmm. Yes, well maybe that is something to discuss. But, remember, babies use their tongues in a totally different way to drink from a bottle than they do to eat from a spoon. So, if we decide to wean her soon, don’t be too surprised if she finds it very confusing. Also, leading research leans towards baby-led weaning. So, if we…”

Every time she uses “we” as if I can’t make a decision about my child without her, I want to scream. Instead, I nod and smile.

She continues with enthusiasm about baby-led weaning which, from what I can gather, means my half-brained baby will learn how to feed herself with a spoon. “If you think about it,” she said, “you spoon-feeding your baby is really, very intrusive.”

Tonight, I completely ignored her attempts to discourage “us” and bought baby rice and spoon fed it to my daughter. May loved it! Vindicated.

Eat this SALT.

Eat this SALT.

This week I'm... rolling and stimulating hands.

September 19, 2009 at 22:54

Mama Lewis


Some of the experts working with us tell us there isn’t much we can do with May until we know what her limitations are – frankly, I think that is bollocks. I know she is young, but I don’t think you can start early enough.

I thought it might be interesting to keep track and see how she does. Everything below I’ve come up with. I’m not an expert, so this really is to keep track of May’s progress.

This week I am focusing on her hands and rolling.


  1. in bath – splashing and pouring water over them
  2. positioning her so that she can suck her hand
  3. placing her hand in my mouth while I make sounds
  4. eating a banana (she loves bananas – I haven’t even started her on food yet!)

Her hands are usually fisted, but they will open and all the above have been successful in doing so as well as getting her arms moving. Basically, if I can find something she enjoys we are halfway there.


This is more of a exercise than anything else. She lies on her back. I count to three as I push her a tiny bit to prep her and then over she goes! She’s now to the point where she only needs me to show her once or twice what to do and then she will roll herself back onto her front without any assistance. This uses her arms as well which is amazing because she uses her arms and hands least of all.

She really impressed me last night. I put her on the sofa on her front for tummy time. I was momentarily distracted by the tv, and in that second she’d flipped herself over and off the sofa. Luckily, I was sitting on the floor next to her so she just plopped into my arms. I was absolutely astonished. She’d done it without any prep from me!

How is it possible that my half-brained baby can learn these things? She is incredible.

Eating Out

September 19, 2009 at 21:56

Mama Lewis


Today, my husband and I set off for a lovely pub lunch on, what was bound to be, one of the last warm Saturdays of the year. We nabbed a big table in the beer garden of pub up the road. My husband ordered our food and went to fetch a newspaper whilst I sat and bounced May on my knee.

May requires endless bouncing. She has discovered her legs. She loves nothing more than flinging herself up and down, up and down, up and… you get the point.

At the next table, three couples gathered. Each had an infant in tow. All were about May’s age. It was a kind of celebration of sorts – the kind friends have over nothing in particular except the fact that they love each others company. I could not help but watch them. Or, rather, watch their babies and their hands open, exploring.

My heart sank. My lovely darling girl bounced flamboyantly on my lap, but I could only think about her hands and how they remain mainly fisted.

The food took almost an hour arriving. An hour wherein I watched those roly-poly babies across the table. By the time it arrived and the waitress asked if everything was alright, I practically yelled my response, “No. The food is late and my husband has three lettuce leaves on his plate. Three lettuce leaves does not constitute a caesar salad!”

A ridiculous outburst. I did apologize to her.

It’s only been 4 1/2 months after all. Only 4 1/2 months to get my head around the idea that my child is brain damaged. I hope these posts lean more towards the positive, but sometimes, like this week, it is hard to avoid the weight of the matter.

Still, she is happy. A happy, bouncing little girl. And, it is impossible to remain miserable with a chuckling baby in your lap.

Fumblings with the doctors

September 18, 2009 at 20:54

Mama Lewis


Anyone familiar with a long-term illness or disability will understand the frustration I feel trying to get a hold of a doctor. Further posts will go into more detail about my intense irritation, but for now just today’s difficulties.

This week May has exhibited increased twitching. Essentially, it is a muscle twitch – sometimes in the face, sometimes in the hand, arm or foot. It doesn’t seem particularly serious, but as it is causing her a bit of distress, I tried to contact her Pediatric Neurologist, from here on referred to as the Boss, since that is what the on-call neurologist at the hospital called him. It’s not a euphemism. May’s doctor is also one of the directors of the hospital.

She had an EEG the previous week so it should have been as easy as someone checking that and giving us a “hey” or “nay” as to whether the twitching was anything more serious.

Unfortunately, being the Boss, means a constant battle getting a hold of him. And, as his PA is on holiday this week, the battle was already lost before I picked up the phone. I left voicemails on his phone, his PAs, the department of neurology, my community pediatric neurologist, the duty nurse and finally, finally, finally, got a hold of the on-call pediatric neurologist.

I started calling on Monday. Tonight, Friday, at 6 pm we finally received an answer about May’s EEG.

Good news! The EEG showed no further seizures. The on-call doctor told us to feel free to harass the department on Monday to make sure the Boss  calls us to discuss the EEG in more detail.

A man after my own heart. Harassing professionals comes naturally to Americans.