Archive for January, 2010

London  – Detroit – Wales – Chicago… and now – Palm Desert, California.

May is half-way around the world. Her mama is with her: soaking up the sunshine, admiring the snowcapped mountains, sleeping in while Grandma does the early shift, swimming outside – that’s right! And, not only swimming outside, but walking, eating, chatting – all outside! All this is possible in Southern California.

The amazing thing, and perhaps I say this too much – or maybe I can never say it enough – is that when May was first diagnosed I didn’t think we’d be able to make it to the shops up the road without dragging along tubes and wires and a massive contraption to support the weight of my growing, but immobile daughter.

But, now – look at us! Halfway around the world. Unbelievable. It is an absolute triumph – I’m not exaggerating. I feel like it is an impossibility made reality.

But, understandably, as beautiful and carefree as this trip to visit my family is, last week’s appointments really took their toll on me. I think it is going to take more than one week in the desert to help me get over it all.

Thankfully, I’m here for two.


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The short version:

Depressing. Hard work. Some moments of major positivity.

The long version:

May started school and her father visited her new nursery, both of which I think are amazing places that will strive to improve May’s development.

May and I also met with multiple professionals. In general, I’d say that everyone involved with May’s care has her best interests at heart. Or mine. But, sometimes, their professionalism gets in the way.

For example, May’s appointment with the big wig metabolic consultant at the children’s hospital. In reference to the pyriodoxal phosphate he wants to administer to May and why she will have to be admitted to the hospital for her first dose, he used the phrase, “We might have to give her a bit of oxygen,” with a warm, dismissive chuckle.

This is what I heard: “She might stop breathing and we will have to resuscitate her.”

Earlier, I met his assistant – also a major doctor – who stared by having a hoo-hah with me about May’s weight. She examined May’s chart, though not May’s chub, and thought she wasn’t putting on enough weight.

“It’s fine,” I said with total confidence.

“It’s very concerning,” she said.

“Really, it’s fine,” I said.

“We have a dietician on our team. She could talk to you.”

And, on…

This is what I mean when I say that anything regarding May’s normal baby-ness is blown totally out of proportion. For example, could her lack of weight gain have anything to do with:

– her sleeping longer through the night and so not taking an extra bottle at 3 am?

– that her head is 1000% below the size it should be? After all, heads are heavy.

– that we are weaning her and she loves her milk?

– or a million other possibilities including that the nurse wrote the number down wrong?

Because, the child has loads of chub. Delicious rolls all over her body. The child is not underweight.

Next, she asked me to “just run through everything again – I’m really sorry to ask you to do this – from the beginning?”

“Don’t you have this in your notes?” I asked.

“Yes,” she said, with that professional and caring half-smile doctors reserve for those patients that don’t follow the path laid out for them. “But, it helps to hear it from you. So, the pregnancy, was it normal?”


“No problems?”

“No, it was perfect.”

“And, then. When did you first know that something was wrong?”

Inside, in my head, in my heart, I felt my entire being shrivel up. I simply could not continue.

“Surely you have all this in your notes?” I repeated. “Because, if you are asking me when I knew, then I will have to explain that the first I knew about it was when I thought my daughter was dying. And, that is too traumatic for me to talk to you about here.”

“Oh,” she said, with a sudden understanding and genuine sympathy, “of course. Let’s move on.”

Both of these moments had the effect me losing all concentration on the task at hand, forgetting to ask about May’s recent EEG results, or ask any important questions about May’s care whatsoever.

The most in-depth query I made from that moment on was asking if pyridoxine was administered as a tablet or liquid form. Worse, despite feeling that the big wig consultant was a decent and obscenely well-informed individual, I walked away feeling like my child was about to tested recklessly, which was the opposite effect he was aiming for.

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Some people would say that eight months old is far too young to start school. HA! I say to you. HA! And – double HA!

Yesterday, May and I started at Small Steps. Class consisted of songs and toys combined with lots of stretching and movement. They used drums and chimes, lots of textures and colors, bubbles and sprays of water.

Even though the teachers made sure it was fun and stimulating from start to finish, May wasn’t exactly a perfect student. Unless your definition of a perfect student is one who screams from the moment class begins until it ends, stops to poo twice and insists on a break halfway through for a bit of juice. The class was only two hours!

Who cares! I loved it. She will love it too.

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Every day this week, May has some kind of appointment. It is always inevitable right before I leave for the States – which I am on Saturday.

But, before that happens, we have to make it through this marathon week. Physio on Monday. Official statement about the negligent pharmacist on Tuesday. Small Steps class on Wednesday. SALT on Thursday. Then, on Friday, off to the hospital for the big wig metabolic consultant meeting.

In between that, I will be ringing people. I asked for a new visual impairment therapist over a month ago, and I know someone was assigned to her, but she hasn’t contacted us yet.

Also, we met with the dietitian last week. Initially, May was referred to her because I wanted to enrich May’s diet with B6. She came and explained to us that vitamin B was in almost everything. Since that meeting, we’ve discovered May isn’t deficient in B6. Still, we arranged a second meeting so I regaled her with tales – the highs and lows of weaning May – which to be honest, seem pretty normal stuff to me.

Beware, mothers of babies with “complex needs” (the PC term the professionals use):

Never regal your therapists with tales of anything your baby is not doing properly when it is a totally normal baby thing. Inevitably, it will become a serious issue.

May loves her bottle. She isn’t all that interested in food, but tolerates it on my behalf. She’ll try anything, but doesn’t salivate over much. Small potatoes really, in comparison to the magnitude of the problem at hand.

At our meeting, the dietitian said to me, “I know I said I was only going to meet with you one more time  and then discharge you, but I am not satisfied that you are doing everything right yet to give May a balanced diet. I think I need to see you a couple more times.”

I know she just wants May to get the best start she can. But, a mama can only do so much. I already feed her fresh homemade food and high-quality baby food when she won’t eat mine. I’ve come to terms with my deficiencies as a gourmet baby chef.

Regardless of how nice or well-intending, I can’t continue to see a therapist because she wants May to eat a more balanced diet. The child is healthy and putting on weight. I don’t have the time, energy or brain power to add “general baby advice” to the volumes we receive each week. So, I’m cutting her from the ever growing list of professionals attached to May. But, I’m a coward. So, I’m doing it over email.

This time next week, I will be basking in the California sunshine. Currently, I am writing this at 3.40 am while I listen in to May in her room, hoping and praying she will go back to sleep. Next week – she sleeps with Grandma!

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Just a half hour ago, May snuggled into my arm, her head against my chest, positioned for the final drift off into sleep. Nestled in, her hand naturally curled towards her face. She often lies like this, sometimes even sucking a bit on the edge of her hand if she can place her head close enough. I position my hand under her arm in case she needs it steadied.

Tonight, May opened up her hand, each finger spread out including her thumb. She paused for a split second and then stuffed her thumb in her mouth. I watched in total, absolute awe as she suck, suck, sucked. She didn’t jerk it out. She just sucked on her thumb like any other eight-month old baby would.

I took away my steadying hand and she continued. How much time passed while I gazed at her? It could have been five minutes. It may have been twenty-five.

All week we’ve focused on eating. We’ve tried out all kinds of things in her hands for her to suck on. I want to improve May’s grip, hand and arm control. Also, the SALT advised us to feed May textured food and place it in the back of her mouth, to encourage her to eat more, use her tongue in new ways and therefore build the muscle for speech. Tonight, I heard a “ha” sound for the first time.

To suck, I always have to guide May’s arm. She cannot pull her arms in front of her body, mid-line, without some assistance or special positioning. But, she’s been gripping the objects better. They don’t get so easily knocked out of her hand when they hit her mouth like they used to.

Are all these things related, or is this May’s natural development? I suppose I will never know.

But, I felt much pride tonight.

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May has 1,000 specialists working with her. Mild exaggeration.

Today, I met yet another. I wasn’t looking forward to it. In fact, I’d already decided May had enough so-called experts.

Brave thoughts swirled through my head like, “Maybe we don’t need 1,000 specialists. Maybe some of them should go. Especially those who applied for their jobs because they like to coo and cuddle babies. I can coo and cuddle without anyone’s help! And, I’ll chuck the ones who give me ridiculous advice. Like the one who told me not to microwave baby food as it zapped it of all nutrients. Can a microwave remove nutrients? Where do they go? Doesn’t all food lose some nutrients when heated?”

Sorry, my thoughts have a tendency to ramble.

Not all 1,000 specialists are bad. Some are even good. The support worker I met today seems excellent. She focused on what May can do, as opposed to what she can’t. She actually worked with her, instead of only telling me what to do or demonstrating. And, she has over 20 years experience in her job – now that is rare. In London, if you work in the medical profession you are under-35, unless you are one of that rare breed, the incredibly experienced professional.

Before I go, a nod to another one of May’s specialists, who sadly is no longer working with us. May doesn’t need her anymore – which is a good thing. She racked up all kinds of plus points in my book by acquiring expensive equipment for May, sometimes when cheaper, less effective equipment was on offer.

She ordered May’s new Triton chair, where a lot of our work is happening at the moment. We use it as a high-chair during meals, but also for play. It holds her legs in place and her body erect she can concentrate on feeding herself yummy biscuits.

Interestingly, in her throne, she also bears an uncanny resemblance to Dr Evil. Am I wrong here? Is it wrong to think your adorable daughter looks a bit like Dr Evil?

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A representative of the Royal Pharmaceutical Society of Great Britain contacted me this week regarding my complaint against a pharmacist. He cautioned me that without hard evidence, meaning witnesses or written communication from the pharmacist, the case will be simply my word against his and probably not be brought to tribunal.

He asked me if, given that, I wished to continue. “Absolutely,” I said. “Even if it doesn’t go to tribunal, he will know a complaint was made against him and, if that means that he stops before he puts another child’s life in danger, than my complaint would have been a success.”

Next week, I will give him a formal statement. In the meantime, I plan on contacting the manufacturer to ask if it is true that they would not supply the pharmacist, as he claimed. Perhaps that is where my “hard evidence” lies.

Or, maybe I’m getting a bit too excited after watching Wallander.

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