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Two weeks and waiting...

September 29, 2009 at 14:56

Mama Lewis

0

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?

An Educated Woman Learns Something!

September 28, 2009 at 21:13

Mama Lewis

4

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!"

September 25, 2009 at 21:09

Mama Lewis

5

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

Warning: cute baby alert.


 

This week I'm... (update)

September 25, 2009 at 08:41

Mama Lewis

3

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.

Head Measurement - Part 2

September 24, 2009 at 10:19

Mama Lewis

1

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.