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Well, what of their families then?

Cuts to local councils make our lives ever more challenging. Here is a simple story to help illustrate this. One, I think, even Tory ministers can understand.

Several months ago, we applied for a disabled parking spot to be placed outside our flat. Our road is one of the few ones near the shops that isn’t permit parking only. It crowds very quickly with cars.

May is 2 1/2 now. She is heavy and can’t support her own weight. Most days, I have to park far down the road and carry her across the street and into our house. Along the way, I have to fiddle in my bag for the keys, open the door and climb a couple of flights of stairs, all while holding her.

We received a letter about a month after we applied saying that due to financial constraints, they wouldn’t be able to investigate our request until September and put in the space before December.

That was bad enough. Today I opened a new letter. It’s worse:

Unfortunately due to the delays caused by the financial diffculties the Council has recently faced the estimated timeframe for the installation of your Disabled Parking Place has had to be adjusted… we are due to begin work on this batch in December 2011… it takes a minimum of 3 months to introduce a Disabled Parking Place and we estimate that the eariliest date the installation of the Diasbled Parking Place you have applied for shall be March 2012.

Almost a year before someone paints some lines on the road outside our house?

And, that’s the “earliest” that Lambeth imagine this issue will be resolved. May will be three years old then, and heavy. She is completely disabled. She can’t even throw an arm over my shoulders. How long before it is completely unfeasible for a small woman such as myself to carry her down the road? Do we have to be completely housebound before someone in Lambeth or the government see this is an irresponsible way to manage disabled parking?

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If I can't see it, I'll eat it!

I will remind everyone reading this that I’m not a doctor since I’m about to explain how vision develops in a baby. (Feel free to correct me.)

There are two aspects of vision: mechanical and cognitive. Mechanical is how the eye moves, focuses on things, etc. Cognitive is how the brain reads, identifies and remembers what you see.

The two are very different and yet they work in conjunction with one another. So, when May went to her first eye appointment (lots of fun, you can read here), the mechanics of her eye were fine, but the nerves that grow at the back of the eye and link the eye to the brain were not developing.

Why not? Because the brain received information from May’s eyes, but the parts that could read that information were, shall we say, unavailable. Children are not born with 20/20 vision. The develop their vision for the first five years of life, so if May’s brain can’t read what she sees, her vision as a whole is effected.

To go a step further, even though the mechanics of May’s eyes worked initially, in order to progress they needed her brain to be registering what they were seeing.

Does that make sense?

I condensed over a year of my own research into four short paragraphs so feel free to be confused. For further reading, I would suggest Cortical Visual Impairment by Christine Roman-Lantzy.

Indulge me for a moment.

This was the single most challenging issue to find any information about. It took me over a year just to find it. I asked every doctor I saw. Every single one, even the ones I respect the most, told me there was nothing I could do. Worse, they had no information to pass on to me. That is how little is known about visual development in babies, let alone brain damaged ones. Furthermore, later I discovered that some of the doctors knew about the Great Ormond Street Hospital Developmental Vision Clinic and didn’t suggest it to me. Once I found it, on my own, they were reluctant to refer me to it.

Why is this?

In every physical way, May has therapy. In every cognitive way, May has none.

Why is this?

I must not be the only parent who is desperate for information to help their brain damaged child develop cognitively. I don’t need to say how important vision is to development.

You can click on the Visual Development link in my right side bar to read about some of the things I’ve been doing with May to improve her vision. And, it is improving – just slowly.

Next month, May goes to the famous Moorfields Eye Hospital to have her vision evaluated (mechanically and cognitively) on the suggestion of the head of the Developmental Vision Clinic at Great Ormond Street Hospital. It would have happened earlier except I had a little issue getting there during the past month. That little issue being a new little baby.

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May has a physiotherapist. She is a member of May’s community team, so we don’t pay any additional money for her and she works alongside everyone else who works with May. She is professional and organized and I should feel like she is enough, but I don’t.

She isn’t just May’s physio. She is also May’s key worker, meaning she organizes new equipment or referrals if we need them. If I have a problem with funding or with a member of the team, she takes care of it.

But, she isn’t just May’s key worker. She is also the person at the center who measures and orders the lycra suits for all the children who need them, including May.

That’s a lot of stuff. And, I worry that in between all that, the physio itself gets a raw deal. She sees May with some frequency, say once every three weeks, but during this meeting often it is the administrative end of May’s care that is the priority.

May does the same daily stretches she did when she was a baby. That’s not necessarily the wrong thing since the stretches are about keeping May’s full range of movement as she doesn’t move very much or in the manner a two-year old should.

Are they helping? I don’t know. I know that May has a good range of movement for a child such as herself. So, yes, I suppose they are.

Is she progressing? Not sure. Her progress is very slow. I don’t like creating lists of what May can’t do, however there are some things I thought physio could have achieved. For example, May still pulls her arms in towards her chest or hyper-extends them. She delivers few relaxed, deliberate arm movements. Yet, she does thrust her arms forward to hit a toy. This implies to me that she does understand that her arms can be used to manipulate an object, even if her movement is clumsy.

Shouldn’t physio play a role in improving this?

It is disheartening to do the same stretches, songs and activities over and over again for two years in the hopes of stimulating independent movement and not help May achieve it.

On the other hand, maybe the progress  and range of movement May has is really amazing for her skill set. Maybe I should be thinking about further progress along the lines of what she is realistically capable of.

I don’t believe in the “It can’t hurt” philosophy. If it doesn’t work, we waste money, but the time with May is even more precious. If it is unproductive, if we could have enjoyed that time together and instead I forced her to do all kinds of nonsense, it will hurt.

My question for you readers in the know:

Should I invest in additional physio for May? And, if so, what kind?

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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.

___________________

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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May is “severely visually impaired”. She has “severe brain damage”. Referring to May using medical terminology is always depressing, but more so when it is a medical term that is also used widely.

“Severe” is as term I come across a lot in May’s medical reports. It is a term used casually and freely. It has the opposite effect on me. Like when I accidentally picked up what I thought was a medical appointment sheet off the floor of the car this week, and it turned out to be her visual impairment report.

The medical definition is “a disease that is so severe that it dominates all other activities”.

Is May’s brain damage so severe that it dominates all other activities? I can’t say that it does. It does overpower her at times, like when she has a seizure in the middle of a rigorous bounce. But, she pauses, she shakes a bit and then she lights up and the bouncing continues.

Is this the definition of severe?

I’m more impressed by May’s ability to dominate her brain damage, than it dominate her.

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Result: Not much change.

May’s brain is developing as expected, meaning much of her brain isn’t developing as the tissue is dead from the previous injury. Though there is damage throughout the brain, the basal ganglia (part of the brain associated with movement and learning – thank you Wikipedia) is less effected than the other parts. None of this is new, but it could be part of the reason that May is such an avid bouncer. But, it doesn’t completely explain everything.

The Boss was joined today by another doctor, a consultant in epilepsy. I liked her immediately. Clearly, she has the Boss’ respect, but she also had an unpretentious manner, especially considering the subject, that only a very experienced and well-informed doctor is capable of.

She emphasized the positive: if reading the scans alone, without seeing May, a doctor would expect to see a child who was much less alert and barely moved at all. The child would be almost entirely stiff.

This was the nightmare I envisioned back when we originally heard of May’s condition. The fact that May is nothing like this, that, in my opinion, her problems are minimal in comparison, is something I am truly grateful for. In fact, the doctor said the worst of May’s tone, in her arms, was not as bad as we’d thought. She noted something we always knew, but had not seen as significant, that May is stiff at first when confronted with movement, but relaxes as the movement continues. This is all very encouraging.

The consultant added some good news: she doesn’t think that May’s spasms are epilepsy and we are no longer raising her Phenobarbital medication in case of seizures. If all goes well, she will stay on her current dose until one-year old, weaning herself off as she grows.

Finally, surely a world-record today. May fell asleep, snoring comfortably on my husband’s lap during the consultant’s talk about May’s MRI. “You’re boring her,” my husband said. We all laughed. When the consultant finished, she asked to examine May. In the short time it took me to lift the completely sleeping baby off my husband’s lap and into mine, she was up and bouncing.

No news yet on the sight test.

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May received an early Hannukah/Christmas gift this year (yes, we are a dual-religion household in addition to dual-citizenship). It’s official – May starts classes at Small Steps School for Parents in January!

If you are shopping for some stocking stuffers of your own, and use shops like Amazon, Ebay, M&S and Mothercare, why not help May’s cause (and everyone else who benefits from the school), by making your purchases through the following web site:

http://www.buy.at/smallsteps

Small Steps receive a donation for every purchase you make. Guilt-free shopping! Another early present for us all – thanks Small Steps!

Here’s hoping that Santa has a few more tricks up his sleeve. May had a brain scan today to test her sight and tomorrow she has an MRI. The results should be in before Christmas.

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It is easy to get bogged down in the negative when dealing with a disabled child. Certainly, it always seems like the things that frustrate me make the blog while the rest falls to the wayside.

Because of this, I hope I point out, and here I will, people throughout who really come through for us.

When May first came out of sedation, she spent about a week groggy, her eyes little slits like they were attached to tiny weights dragging them ever downwards. They didn’t feed her at all in her first week because the seizures could make her vomit and this in turn could clog her windpipe. (They didn’t starve her, she was given a saline drip with electrolytes- Red Bull for babies.) In her second week, they began to tube feed her. I expressed milk which they fed her along with some other concoction of which I can’t remember.

During the same week, she was transferred to the High Dependency Unit. This was a great moment. It may not sound like it from the title of the unit, but believe me, it was a huge deal. It meant she was no longer caged within a clear, plastic incubator. Instead, she lay in a cot so we could pick her up any time we wanted. And, I did.

After about a week of this, I wondered why or when we would try to feed her “the normal way.” This is the trouble with being institutionalized. It never occurs to you to just try and breastfeed. It must be discussed. Charts read. Doctors consulted.

In May’s case, no one was sure if she had those basic baby reflexes: to suck, to swallow. Directly after her birth, she refused to eat, and her severe brain damage meant she might never be able to.

But, we believed. May was already sucking on our fingers and a little pacifier (dummy the Brits call them). Our first video of her is one taken on my phone, of her, in my husband’s arms, my little finger in her mouth and her suck-suck-sucking away. Also, she never drooled. Surely, this meant she was already swallowing?

I asked, “When will May have her swallow tested?”

The nurse shrugged like it had never occurred to her before, “Why not tomorrow?”

Tomorrow turned into a five day wait, as the SALT broke her wrist. This gave me the whole of the weekend to mull over whether or not my daughter would be capable of swallowing and what it would mean to our future if she could not.

Think about that for a moment. You parents out there who have never thought of such a thing. Imagine you ever had to contemplate the idea of tube feeding your daughter for the rest of her life. The discomfort that would cause her. The infections. The idea that she would never taste delights like ice cream.

I was riddled with nerves on the day. The SALT came in with a flourish. She was bright – in both senses, cheery and intelligent. She didn’t patronise or distance herself. She immediately got stuck in, studied May and discussed the course of action.

Here is how you test a baby’s swallow. You put liquid into her mouth. If she swallows, it works. If she chokes, it doesn’t.

Imagine that, parents.

Without a doubt, this woman was one of the heroes of my daughter’s stay in hospital. As a parent with a child in SCBU, you are asked to endure unbelievably excruciating, emotional hurdles every day. To be able to put a parent at ease during such a moment is a rare gift.

May swallowed. We all cheered.

“When do we try breastfeeding?” I asked.

“Why not tomorrow?” she replied.

And, you know – the breastfeeding experts were heroes too. Heroes, for another entry.

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CP Web World

Two readers wrote into me recently to share their own web sites dedicated to their children, sharing the struggles and joys.

That any of us find the time to use a computer, let alone shower is a miracle.

Please check out their sites!

http://www.pixelpaper.org.uk/

This web site means to link up families, much in the same way as a dating web site would. If you are struggling or just want some company on-line with someone who will understand the complexities of your life, please check it out!

www.fund4sydneymae.co.uk

This is a web site set up by some wonderful parents to help their daughter. It also has a blog going into details of the therapies they are trying out, so it is excellent for a personal perspective.

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