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Head Measurement - Part 1

September 23, 2009 at 21:21

Mama Lewis


Tomorrow, the Health Visitor comes to my flat. She comes to everyone’s home after they have a baby. She is one of the only ordinary people associated with May’s care.

She wants to see how May is doing and part of that is measurements – weight, height, etc. For normal parents, this is an uneventful moment. But, for me, it is very stressful.

Just like all babies, May will have her head circumference measured. Heads do not grow along with the rest of the body. They only grow as the brain grows. And, the brain only grows if it is developing.

May’s head growth slowed in her last three measurements. It reached the zero-percentile and then dropped off the charts altogether. Then, it stopped growing entirely.

I try not to place too much weight on measurements and focus on May and who she is. Delightful. Full of energy. Warm and cuddly. But, when cold hard facts present themselves, it is hard to ignore them.

An educated woman

September 23, 2009 at 10:40

Mama Lewis


Yesterday, in an email to the Boss, I used the phrase: “I’m an educated woman.” I felt I had to say it. I was asking him to recommend a text regarding brain damage in infants. I have never used that phrase before in any capacity.

In my normal life, as a writer and teacher, it goes without saying. In the world of disability, however, I feel like even I, the parent, am somehow tainted with the presumption of being less able.

For months, I’ve been trying to get a hold of a book, or text of any kind. I want to know all kinds of things. For example, how is it possible that May would have sub-clinical seizures in her sleep? And, if they occur during her sleep is that somehow better or worse, or completely different than if she was awake? And does it matter?

Also, would someone finally explain to me what a sub-clinical seizure is?

I have far more questions than just that.

I’ve asked doctors and therapists for a recommendation and received no suggestions. Sometimes, the person tries to pawn me off with general leaflets on cerebral palsy (it’s brain damage – I get it) or tells me that there will be many professionals supporting me that I can ask all kinds of questions to later. But, the thing is, there aren’t. The people dealing with May, deal with her immediate needs. They either do not have the time or the inclination to answer these questions. Or, perhaps they don’t even have the knowledge.

The other day I spoke to the neurological nurse at the hospital. I was trying – as I had been for over a week – to reach the Boss. She seemed nice enough, so I posed a question. “May,” I said, “is trying very hard to suck her own thumb. But, as she brings it to her mouth, she jerks it away from her face. Why would she do that? It is so frustrating for her.”

She sighed mournfully, “Ah, bless. The poor thing is trying to suck her thumb.”

I don’t need soothing. I need answers so I can better understand my daughter.

I am an educated woman. I can learn.

This week I'm... spinning.

September 22, 2009 at 10:14

Mama Lewis


It’s not exactly a week later, but I thought I would write a bit about what I have been doing in previous weeks.

As, stated elsewhere on this blog, predictions of May’s future have been very grim. But, at the same time, I do credit the doctors who said – and it was especially the older, more experienced ones¬† – “We have to wait and see what the baby does. She will tell us what she can and cannot do.”

At the moment, she is a terrific bouncer – with loads of strength and control in her legs. She smiles all the time and can eat for Britain.

I believe much of this stems from me introducing her to movements, and sometimes quite shocking ones, early on. I have not been satisfied that she will be a vegetable.

So, as soon as I got her home, I started May’s amazing tricks. In this case, spinning:

The idea of spinning a brain damaged baby around may be shocking. I pressed the front of her body to mine and my hands lightly supported her back and neck. Very lightly in fact. I always spun one way and then the other so she wouldn’t get too dizzy.

No experts told me to do this. My opinion was that it would improve her back and neck strength. Also, I thought the bizarre feeling of the world spinning on its axis, how that looked and felt – would be good at improving her eye and brain focus.

She loved it! It was one of the first ways she communicated to me. When she wanted to spin more – which she always did – she would throw herself backwards. And to end, she would cuddle into my chest.

The therapists always comment on how strong May’s neck and back are. “Excellent posture” I heard last week from the OT. And, I think spinning has something to do with this.

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.