An Amazing Half-Brained Baby Milestone: 200,000 hits!

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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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Got any good news for me?

Today, my husband pointed out that we are four years into the recession in Britain. “There will probably be four more,” he said, grimly.

“And, with the budget cuts the government has made, probably even longer than that,” I said, equally as grim.

It is just such conversations, casually breached in the comfort of my mother-in-law’s front room, that set me a bit on edge today. As a result, I’ve decided to riddle this post with GOOD NEWS. Here goes:

1. A couple of months ago, my students and I asked for contributions towards Small Steps School for Parents. May attends this lovely, little school where she plays games, listens to songs and rubs her hands and face in chocolate pudding – all in the name of stimulation and improvement.

To raise money, my students learned a Bollywood dance that they performed to an audience of fellow students. They gave assembies to their Year Groups about Small Steps and also raised money through a cake sale.

In total, the girls raised £324.74! (about $500)

2. My husband, also a writer, has a blog on WWI poetry called Move Him Into The Sun that has seen a massive gain in readership in the six short months it has been up. Of course, I am biased, but he is an incredible writer and if you are at all interested in the subject, you will find it as stimulating as May finds Small Steps.

Congratulations Gareth!

3. My mother is a genius. Check out the new bib that she bought for my daughter.

I refused to believe that May would tolerate such a presence on her arms, but again, I was proved wrong. A lesson that I really should listen to my mother. (She will be so pleased. It only took me 38 years to learn that.)

Congratulations Grandma Bar!

How about you? Got any good news?

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You can now follow Mama Lewis on BabyCenter, where I will be writing about my pregnancy, or Twitter!

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May eats chunky food!

Until today, at its most challenging, May’s food was mashed, smashed and bashed to a pulp. Her favorite food – a mixture of bananas, peanut butter, graham crackers (digestive biscuits) and milk – contained some lumpy bits of banana, but that’s about as difficult as it got.

But, May has teeth now. She’s spent the last month or so grinding them, chopping down on spoons – basically, shouting, “Mama, I’m ready!” And, what’s Mama been giving her… yogurt, scrambled egg, ice cream (who doesn’t like ice cream?)

Today, that all changed! Little chunks of food for May!

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This week I’m… encouraging sounds.

Oh, the delights of good health! Ah-goo! Ah-gah! Oh-boo!

Since May’s health has returned, so have her giggles and cooing. She’s also back to bouncing, something she didn’t do for a couple of weeks.

Now that was a terrifying realization for me. No bouncing? Seriously ill. Cue conversations with my husband where I ask, “Should we take her to A&E?” (We didn’t.)

It has been a tough month. Fevers. Puking. No sleep. Screaming as the main form of communication.

No, it wasn’t fun. For the first time ever, my husband and I discussed respite care, which seems like both a godsend and a cheat. I’m a capable woman and it is not easy to admit you need help. But, lots of other parents like us receive it gladly, but it makes me feel like I’m giving up on May. Like many things related to May, it is another emotional hurdle to get through and once I’m through, I’ll feel all the better.

When I next meet with May’s key worker, I’ll ask her about respite care. We are thinking about now, but more importantly once the baby comes. Who will do May’s stretches with her? Who will take her to Small Steps School? Who will coo silly sounds back to her when she asks?

Because, in May’s own way she has been communicating more of her desires. It isn’t a sophisticated system (I want water during dinner = screaming). But, one of her new techniques, to pretend she is being tickled in order to get tickled, amuses me to no end. May squints her eyes, pulls herself toward her tummy and starts to giggle. Adorable.

Also, May enjoys hearing me repeat sounds she makes. She even recognizes that I’m doing it – which is a big step in itself.

She also responded to this hilarious video of twins imitating two old Jewish guys. “Oy, gevalt!” said May. (She’s also Jewish – though I exaggerated a bit there with her use of Yiddish.)

Actually, everything to do with her mouth she loves these days. Getting her teeth brushed. Making bubbles. Chewing on things. Oh, and grinding her teeth – an unfortunate result of her inability to lift anything to her mouth to chew on. I can’t stop her and I can’t hold a teether in her mouth 24/7.

Any dentists reading this? Or, parents with know-how? Advice on teeth grinding much appreciated.

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You can now follow Mama Lewis on BabyCenter, where I will be writing about my pregnancy, or Twitter!

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Six-Month State of Brain Review

Every six-months, May’s team review her “state of brain” (if you will allow me such a turn of phrase. Actually, this seems pretty minor compared to “half-brained baby” and no one seems to mind that).

It is a developmental review, but “state of brain” sounds so much more accurate. Accurate and ominous. Accurate because they don’t just look at her developmentally, but also review her general health and seizures. Ominous because inevitably someone says something at these reviews that sends me into a minor tizzy for weeks.

We’ve had two other reviews, at six-months and a year. Originally, I thought these reviews were for us, the parents, to learn how May was doing. To be honest, I would find that far more helpful as opposed to what they really are for, which is for the team, to hear how we think May is doing. The positive thing is that having everyone in the room together means that we collaborate on what we need to do next.

Without a doubt, May’s team benefit us. They fight for her funding. They acquire amazing equipment for her. In the coming months – or years – as the government tightens ever further on funding and gives local councils ever more freedom to spend it as they will, we need professionals fighting our corner. That is, if they still have their jobs (see my last post).

But, I am not a saint and I do disagree with the professionals sometimes. During May’s last review, her pediatrician made May’s weight a sticking point. Despite me repeatedly explaining a recent weight loss and May gaining it all back by the time she saw her (within a month), she insisted I see the dietician.

Thus began a vicious “British” argument, which means we didn’t argue but pleasantly disagreed with one another, neither of us backing down. She even called me to discuss it further that evening and I again stressed my “deep reservations” about seeing a dietician – to no avail. She’s made the referral anyway.

I made the following points to her, which she clearly disagreed with, but I still feel are true:

1 – If it wasn’t for May’s brain-damage, we wouldn’t ever have a dietician conversation. If May was a “normal” baby, she would be given a prescription for a supplement to boost her weight. Because she is brain-damaged, it is assumed that her lack of weight is something I need help on (what I will call the ‘Parental Brain Deficiency Syndrome’ when doctors seem to think parents of brain-damaged children are also brain-damaged).

Having said that, she did write in the report that she felt nutritionally May had an adequate diet, but that input into calorie uptake would be useful to the parents. It’s not, but at least I suppose she tried to soften the blow.

2. It is not always necessary to intervene with May’s care. We receive a constant stream of advice from people. We are not allowed to parent on our own. We are not given the room to make mistakes. In this case, if we feel that May’s eating has significantly improved and the pediatrician is unable to look beyond the numbers, who is correct?

I’m a reasonable person. In general, I follow the advice I am given. But, I should be allowed to disagree and make my own choices about how to parent my child over fundamental things like what she eats.

I received the written report for the review yesterday. It contained all kinds of small discrepancies with what I said on the day. The report says she has just begun vocalizing, when she has been doing that for a year. The report says that May doesn’t enjoy bouncing as much as she used to. What?!? Tell my arms that. Finally, the report contains some supplementary advice, I assume given by the dietician of whom I specifically expressed reservations about.

The advice is to change her milk to Aptimal to add calories. Good advice, if it wasn’t for May drinking Aptimal since she was born.

I suppose this may seem petty when compared to the enormous amount of good work May’s team do. And, I’m aware of the irrational streak in me that just wants to tell everyone involved with May to F-off and leave us alone. Or, maybe it is not unreasonable for me to ask that when assumptions are being made about our care of May, the facts should be correct.

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This week I’m… drinking from a cup

This isn’t meant to sound like an argument for the “just stimulate them the best you can/there is nothing you can do differently to help your brain-damaged child” camp.

It is, however, meant to sound like an argument for “if you can find something they enjoy, they will figure out how to do it better/faster” camp.

Of course, no one told me this before I invested in 1,000 sippy cups, only to have my daughter routinely laugh in my face and use them as chew toys.

My daughter’s newest seizure medicine (the one she has been taking for the last few months) tastes of blackcurrant. May loves the taste of blackcurrant.

Before this tasty concoction, every time we poured liquid in May’s mouth, half went out the sides and half, perhaps accidentally, hit the back of her mouth to be swallowed. Within days of the blackcurrant medicine infusion, May learned to sip. Now, two months down the line, she slurps from the cup, just like you or I. Bottle to cup, without any sippy step.

When you enjoy something, you want to do it more. You learn to do it better.

In that way, it seems, brain-damaged babies are no different than the rest of us.

 

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The Seizure Diet

Early after May’s release from the hospital, it became clear that for the doctors, May’s seizures were their biggest concern. Like the rest of her injuries, the cause of her seizures perplexed them. One by one, May trialled numerous seizure medications, seven so far; currently May takes four. The most recent addition, Lamotrigine, May began two weeks ago though, due to its side effects if administered too quickly, it will take three months before she is on the full dose.

We hope, as we always hope, that this one will be the one. That this one, will be the one, and not the four she takes.

Early on, therapists mentioned a ketosis diet that, once May was older, we could try to see if we could get her off these medications completely. What a lovely idea that sounded like.

That was before I read Fred Vogelstein’s article Epilepsy’s Big Fat Miracle in the New York Times Magazine this weekend. Until then, I thought this diet was a typical, healthy diet of the kind you would expect a hospital affiliated with Harvard Medical School to prescribe.

Vogelstein’s son has almost 100 seizures/day. That sounds outlandish, even to me, but then I remember that at one time May had over 800/day. Luckily, May’s medications keep that number down. Before her new medication, she was at to 3 or 4 an hour (that’s almost 100/day). We are in the honeymoon period of her new medication – today we saw four, which is great news, if it continues.

That was exactly the problem with Vogelstein’s son. Despite medication, they did continue, in fact they got worse. So, he took drastic measures, albeit drastic measures backed up by medical science.

As he describes it, his son’s diet is almost 90% fat. “Some might argue that unhealthful food is all we let Sam eat. His breakfast eggs are mixed with heavy cream and served with bacon. A typical lunch is full-fat Greek yogurt mixed with coconut oil. Dinner is hot dogs, bacon, macadamia nuts and cheese. We figure that in an average week, Sam consumes a quart and a third of heavy cream, nearly a stick and a half of butter, 13 teaspoons of coconut oil, 20 slices of bacon and 9 eggs.”

Not only that, but he is strictly forbidden to eat anything outside of the diet. Everything he eats must be weighed. Every recipe made must be eaten in its entirety. There is no room for maneuver.

There is a fine line walked in the name of children’s health. Saving one thing at the sacrifice of another. Clearly, Vogelstein and his son feel it is worth it. If he continues, there is a chance he could come off the diet seizure free in a couple of years.

I’m not sure I could put May through this. Already, we know that she finds eating, not impossible, but definitely difficult. She can’t feed herself and she often tires mid-meal. These variables would work against such a regime.

However, the most profoundly difficult obstacle to surmount, would be my reluctance to refuse to feed her things she enjoys. After all, delicious food is a pleasure she can achieve and I’m not sure that would be a sacrifice worth making.

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What I learned this week

Oh the tangled web I weave. May’s dietitian wrote me an email after our phone call.  She said she knows I “expressed no concerns about May’s eating”, but “it is paramount” that I supply her with a diary where I’ve recorded all May’s food intake for a week so she can “verify whether May is meeting her energy and nutrient requirements and make adjustments to meet her needs.”

Of course, I quite plainly said I was concerned about May’s weight. But, you know, details shmetails.

Class: What has this story taught us? When you tell a professional that you don’t require their services, what you are really saying is that you aren’t concerned about your daughter’s health, but still wish to fill out a lot of paperwork about it and act on whatever advice is given.

I found it perplexing that her concerns didn’t seem to stretch to asking why May might have lost all this weight. But, then, who am I to insist on a bit of professionalism?

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Autumn in May

Nothing better than an Autumn stroll.   If only everything about this season was as full of joy as May’s smile when her stroller crushes crispy leaves.

May’s weight, or lack thereof, has her therapists in a tizzy. It’s been low, but I did manage to pile on some pudge on May over the summer.

Unfortunately, the last week has undone all my good work. A double teething achievement (all I want for Halloween is May’s two front teeth – done!) plus a particularly nasty cold, turned May off food completely. I felt so helpless as I watched her legs shrink and those delicious rolls disappear.

Yesterday, May’s SALT and a dietitian, visited May at nursery. When I arrived at the end of the day to pick May up, May’s key worker was enthusiastic about their advice, but in a mild panic about her weight, inflamed by the experts.

This did not enthuse me. May’s key worker said they wanted to arrange a home visit to discuss it with me. I wasn’t impressed with the snap judgement that something was wrong.

My previous experience with the dietitian was not helpful. If anything, her visits caused me undue stress. So, it was with reluctance that I agreed to the nursery visit and only because I know they sometimes have trouble feeding May.

After speaking with my husband, I decided not to see the dietitian myself. I had an email all prepared to this effect, but before I could hit send, she phoned me to make a home visit.

“I appreciate the help you are giving to the nursery,” I said, “but really, I feel I already have too many professionals involved in May’s care.”

The dietitian wasn’t happy. She sounded surprised. “So, you don’t want advice on feeding at home?”

“I’m aware there is a problem with May’s weight, but this is due to illness and teething. Unfortunately, not everyone is able to feed May well, but I don’t have any problem. I feed her fine.”

I felt uncomfortable, after all, what parent turns down help for their child? But, that all dissolved as the dietitian, in a repeat of a year ago, began a rambling list of all the things she felt I needed to do better.

“But, I thought I would advise you on things to eat, like adding butter, cream and cheese to all meals–”

“I do that already,” I said.

“And, I thought I could provide some assistance with homecooked meals. This is very important. She should be receiving homecooked meals.”

That ticked me off. I don’t often write about therapists in this manner, but I felt this was a completely irresponsible thing to say to a parent of a severely disabled child. As a year ago when she insisted – based on no research – that microwaves should never be used, the idea that homecooked meals are imperative to my daughter’s development is rubbish.

When you have a child like May, or any child actually, how do you find the time to cook homemade, baby friendly food every day, every meal without a microwave?

The answer is: you don’t.

And, if I did, what would we be sacrificing? What would May be doing while I prepared these meals? Not stretches. Not reading a story. Not splashing in the tub.

Grrr.

Okay, enough grrr.

If you look closely enough in this photo, you can see the two culprits in all these shenanigans.

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This week I’m… eating with a spoon.

Okay. A slight exaggeration. Not exactly eating with a spoon, more like holding a spoon that already has food in it that May manages to shove in her mouth.

Of course, readers of this blog have been inundated with photos and videos of May attempting to stuff food into her mouth via her fist. “Adorable!” says Mama.

As May progesses further, her hands open up, bat toys, and force my spoon away during meals (anything with hamburger mince receives a severe karate chop in the opposite direction of May’s mouth). For months, we have followed our SALT’s advice and gave May a spoon to hold in her right hand while eating.

This was a communication tool for May to understand food was on its way. Unfortunately, that was all it remained. But, May grips her spoon better these days and less likely to drop it whenever a tasty morsel passes her lips.

Today, I tried out placing a bit of food on the spoon itself. It was the first successful spoon feed we had. May did not turn her wrist in, as she was prone to. She kept her forearm steady and raised it to her mouth, rather than pull away when it hit its target. With a little help from Mama’s steadying hand, she managed to feed herself half her bowl! A great accomplishment!

See for yourself below complete with a couple of very proud exclamations on her part.

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