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Archive for November, 2010

Behold! May the Superhero Princess!

This week, a new weapon in her cuteness arsenal – her Supergirl Suit.

May’s lycra suit is made to measure and fits like a glove. May has to be zipped into it at six points: front, back and both arms and legs. Once inside, I challenge you not to think she looks like a contender in the Tour de France only, of course, much much cuter.

The suit is meant to help her in two ways. First, it will give her added support. Two different materials are used, one with a greater give than the other. Along her back, for example, the white lycra is stiffer than the pink, to support better posture. Second, as it acts like a second skin, it is meant to increase her sensory awareness of her own body.

May’s physio instructed us to trial May in the suit for a couple of hours a day, building it up over time until she wears it all her waking hours. While I nodded in agreement at the physio, inside my head I already had May wearing the suit 24/7.

Like many things in this world, I was wrong about that one. It was very obvious from Day One that May would only be able to handle the suit in short intervals. At first, she found it unnerving. She didn’t want to be put down while wearing it. She didn’t like being held in certain positions.

By today, almost a week on, May can wear it twice a day for two hours each. I believe her sensitivity is encouraging.

In May’s first weeks, she lived in an incubator in the Special Care Baby Unit. We could not hold her, so would gently stroke her through an opening in the side. As we ran a finger along her cheek or against the soft skin of her stomach, she would tremble from the over-stimulation.

We were warned to expect this, but rather than be put off, I continued. After her release, May would be held, kissed and bounced, and to do that she needed first to tolerate being stroked. Luckily, my hypothesis was correct. The more we stroked May, the less she trembled.

The suit will do what we can not: stroke May all day long. If the first days are any indication, it will have as positive an effect as we did.

If you can handle the supersonic snorting noises in the video below, you will be rewarded with May propping herself up with her arms. An amazing achievement!

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Our good friend Andy Harris is running through Hell (literally – Hellrunner Down South) all in the name of Small Steps, the wonderful school that May and I attend every week.

Good news that while Andy will destroy his body (and soul?), May has been enjoying Small Steps more and more each week. Despite their best efforts – silly songs, fun toys and chocolate pudding – May is often a bit of a grump at Small Steps, even at times very angry.

Small Steps is challenging for our little Princess of Cuteness (a title Andy bestowed on May and I believe one that will stick). As I can’t explain to her highness that stretches will benefit her in the end, she gets a bit snippy about the whole thing.

May and her royal subjects: Edie, Archie and Keiran

In the photo here, her highness is having a snooze without regard for her hard-working classmates (who I imagine she believes are there for her amusement).

Luckily, May is stronger than she was when she started there 10 months ago. She tolerates many of the activities that she didn’t originally and even indulges in a giggle when no one is watching. Well done Princess of Cuteness! And, well done Small Steps for sticking by us during the last year.

Small Steps is a charity that does not accept any payment for its services from parents. Andy set his donation wish at £250 – I believe we can at least double that!

Donate now!

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Congratulations fans of May! Your efforts have raised £390 towards Small Steps. You can still donate towards Andy’s Hell Run. Read Andy’s comment below to find out how the race went.

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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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Pragmatic Organisation Dynamic Display (PODD): the clumsiest mouthful of words meant to be a communication system, or a revolutionary system of communication for the speech impaired?

Among the debates eternally raging in my mind, the one whereby I choose to adopt or rubbish a new therapy has to be the most challenging. Every week, I am tempted by new therapies, equipment and advice.

The people championing these can seem evangelical. There is often no quantitative research to back up their theories and most of what they show as proof is circumstantial. They are always extraordinarily kind and concerned, but also defensive to an extreme. They say things to me like, “Our therapy is very controversial so don’t be surprised if you read negative reviews.” Or, in the case of PODD, “Your speech therapist will probably never agree to this,” without having met her (and she is one of the few people I would consider a real expert).

But, none of that necessarily means the therapy works or not. I could base all my decisions on substantiated research, but then, there is very little known about brain damage in babies. Almost nothing. Or, I could just base my decisions on my gut instinct – but then, my gut instinct told me to finish half a crispy duck with my husband tonight that was meant to feed four. It felt right at the time.

All of this feeds the biggest anxiety of all – that I will miss out on the one thing that could have really, genuinely helped May. To the evangelical, the simple answer to this is, “Trying it can’t hurt.” This sounds sensible. But, how sensible is it to spend up to two years before you see a result (at the long end according to the PODD instructor) because it can’t hurt?

Besides, it can hurt. There are only so many hours in the day. If I spend a good portion of that on a communication system that never helps May communicate, I’m not doing her any favors.

As far as I’m aware, PODD works as follows:

You use a laminated flipcart that has the dimensions of a normal sheet of paper (A4 in Britain). It is two or three inches thick and weighs as much as a small truck. You carry this around with you where ever you go and convince everyone you know to use it. (When I asked what the repercussions would be if I couldn’t convince everyone at May’s nursery, for example, to use it, she told me I must convince them. Full immersion, like with a foreign language is necessary.) On each page are nine-symbols (as the child gets better, the number rises and the book becomes lighter) and the pages are categorized under main topics like ‘Places’ or ‘Food’. The object is to move through each symbol on a page, being guided by the book’s instructions to a new page if necessary, until you find the one thing that a child wants. You do this for every action, every decision, slowing communication down and making it simpler for them to understand.

The direction of the conversation is in the hands of the child. They are no longer passive reactionaries, but active and independent thinkers. I can’t help but like the sound of that, if it works.

I can definitely see where it would work with the children in May’s Small Steps class, but May? I’m not sure. And, of course, there is no research I can find to help me make an informed choice.

If you use PODD, especially with a child with Cortical Visual Impairment (CVI) please get in touch.

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Since I posted this, it has been niggling at me that perhaps in suggesting an “evangelical” element to some therapists, that I’ve implied that the woman who met with me and then set up a session at Small Steps for parents about PODD, wasn’t helpful. My concerns about adopting new therapies that I can find no research on (like PODD) are not reflective of her.

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Many times I’ve heard that May’s progress is down to her parents. But, if May never learns to walk, whose fault will it be then?

In my last post, I wrote about May’s ability to stand independently (and party til 4 am). The truth is, while I would like this blog to document May’s progress, I don’t know that I will be any the wiser in the end. How many of her achievements are down to us and how much down to her?

May’s standing is a good example. What got her from not supporting herself at all but enjoying being bounced, to this video a year and a half later?

The first step (if you can call it that – literally or as a pun, it doesn’t rest easy with me) was on September 19, 2009 when I first wrote about May’s love of bouncing.

But, it took another 14 months before May could stand independently. What happened in between?

1. A lot of crying.

2. Over a year of bouncing with support.

3.  Nine months of nighttime baths with light shows (visual stimulation improves helps balance, as well as, sight)

4. A year of arm stretches so they could be leaned on

5. More crying

6. An incredible amount of complaining (from both of us)

7. Luck

That’s right. Luck. Even with the best of intentions, if May couldn’t use her legs to begin with, we wouldn’t be anywhere. We are parents not miracle workers.

The moral of this story: Parents of half-brained babies, beware and be happy. Above all, be proud. I don’t think we will ever know how much of our work helped. But, it didn’t hurt either.

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Today, three adorable photos of May (and a guest post from me) appear on Love that Max, a blog by Ellen Seidman. Ellen was just named by Babble as one of the Top 50 Mom Blogs. She is number 20 – congrats Ellen! And, thanks to all of your votes, I’ve climbed up to the first page of the Babble Mom Bloggers list - woohoo!

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May’s got to fight. For her right. To party for two hours every night between the hours of 2 and 4 am.

Parents do not have a similar right unfortunately. Ah, the heady days of youth.

But, she is paying us back in other ways. Her amazing progress. Her superior power of cuteness.

Sometimes, it can feel like May makes no progress. Then, all of a sudden we realize that several seemingly minor achievements combine and she hits one major development. Here the magic combination of stronger arms, better vision (leading to improved balance), steady head control and those bouncing legs result in the following:

(No babies were hurt in the filming of this video! Strategically placed pillows off camera.)

Pleased with May’s achievements? Vote for her mama to be a Top Mom Blogger at Babble.

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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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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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