This week I’m… encouraging grasping.

An excellent suggestion from a reader, to use a soft baby hairbrush to stimulate May’s hands, has led me to this week’s focus.

Having no hairbrush at hand, and being exceedingly lazy, I scanned the bathroom for an appropriate alternative. I settled on a soft hair roller (see photo below). This has the benefit of being stimulating to the touch, rolling across her and being easily grasped. May responded almost immediately to this new technique.

It also gives me the opportunity to flood the internet with yet more adorable photos of May.

May helps with feeding!

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Enough grrrr.

That last post depressed me.

Here’s some sunshine from this past weekend…

May with her dad

May climbing Old Sarum on a visit to Salisbury

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Two weeks and waiting…

It’s been two weeks and still I haven’t spoken to May’s doctor – The Boss. After the first week of calls, he finally reached my husband. I phoned his PA and begged her “please, please” to have him call again because he had not answered the most urgent of questions: What were the results of the tests? Should we be raising May’s pyridoxine supplement? He didn’t call.

I wrote an email detailing all my questions. Nothing.

Another week passed. Yesterday, a flurry of more phones calls. One of the nurses on his team called me to say he would call last night. Nada.

Finally, today, I lost it.

I phoned his PA and she said, “Well, he did speak to your husband already and now he off-site for the rest of the day so I just don’t think there is anyway he will get a hold of you.” She was sharp and short. I think this must be a well-honed approach.

After two weeks of polite, controlled responses, I shot back: “Frankly, I think that is appalling. I have a brain-damaged child here. I don’t know what to do about her medication. I know, he is busy and the director of the hospital, but he is also my daughter’s doctor. He needs to phone me back.”

There was a long pause on the other end. “Um,” she said. “I would get the on-call doctor to phone you, but…”

“But, he will just say that he needs to ask the Boss,” I finished.

“Yes,” she murmured.

Then, I called the nurse that I spoke to yesterday. Like most of the nurses, she is very kind. “He did say he was going to try and call you. May is very important to him.”

I sighed and tried to hold my emotions in check. “Clearly, she is not important,” I said, “or he would have called already.”

I’m not sure what to do at this point. He is an amazing doctor, but what good is he if I can never get a hold of him?

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An Educated Woman Learns Something!

I wanted a book that explained my baby’s brain. One that assumed the reader was intelligent, even if that reader was a parent. One that did not include adorable, powder-blue baby development charts.

Today, that book arrived.

What’s Going On In There? How the Brain and Mind Develop in the First Five Years of Life by Lise Eliot.

I give you Chapter 6: “Why Babies Love to Be Bounced: The Precocious Sense of Balance and Motion”

Bouncing! That’s all May wants to do. In fact, much of what I have been doing with May makes sense now.

Even better, I finally feel like I’m learning something about May’s brain. I can build on what I’ve read and better shape my approach to meet her natural development.

Illuminating and fascinating.

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May says, “No!”

If you doubt May’s abilities, she will put you in your place!

Warning: cute baby alert.

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This week I’m… (update)

Earlier, this week I wrote about how I’m trying to stimulate May’s hands.

Recap: her hands are mainly in fists and I’m not convinced she is reaching out.

The past couple of days, I’ve been incorporating her hands into feed times. I am physically holding one of her hands on the bottle during feeds. She has a tendency to pull away when anything she wants nears her mouth. I let the bottle go in and out of her mouth according to what she is doing. Of course, I also help guide it back in or we’d never finish the bottle!

Also, I place May’s hand in my mouth while I sing to her. She loves to feel my mouth and her hand blossoms open like a flower. Yesterday, it seemed like she was raising her hand to my mouth on her own! Wishful thinking?

I’d like to think my inspirational voice guided her, but I’m not exactly Al Green.

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Head Measurement – Part 2

Results:

Two months ago it was 36.5 cm and today it was 37.3 cm. (At 22 weeks)

For those of you who are British parents, you can look in your red book and see that she is extraordinarily below where she should be; well below the zero percentile for a baby her age.

The poor Health Visitor. She really wasn’t prepared to be the one to tell me May’s head was too small.

She had the most pitiful and befuddled expression. “Let’s try again,” she said. But, she’d done it right the first time.

So, the good news is that it is growing. Some babies with May’s severity of brain damage stop altogether. But, it is growing at a very slow rate, much below the growth rate of a normal baby.

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Head Measurement – Part 1

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.

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An educated woman

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, why is it that May would have sub-clinical seizures in her sleep? And, in what way do seizures effect a person if they have them while sleeping? Also, would someone finally explain to me what a sub-clinical seizure is?

There are many, many more questions.

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.

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This week I’m… spinning.

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.

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