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Archive for December, 2009

This week we are communicating to May via echoes. She loves a big moan with my husband. She lies on his chest and moans, and he moans in return, and this can last for a half-hour at a time. Never is it is clearer that they are related.

I’ve been trying it as well, with some good results. I’m imitating all different sounds she is making. She gives me a little, delighted smile after she hears the same noise she just made.

At the advice of the SALT, we are feeding her textured food (rather than all pureed) and placing it in the back of her mouth. This encourages her to chew and also gets her tongue moving in new ways. By improving the dexterity of her mouth, we can help her shape new sounds. It is all related.

In previous weeks, I discussed May’s growing ability to anticipate actions and now you can see our little ladybug (NOT ladybird British readers) in action. The video, filmed last night, demonstrates how adept she’s become at anticipating actions. Watch how she laughs at my husband’s pre-tickle gasp. Not to dwell on the negative, but you can also see how limited her arm movement is, though her head movements, expressions and lovely smile are very evident.

Also, listen out for one of those new sounds, right at the end. A sort of high-pitched squeal she makes when she is ridiculously happy. And even though, as you can hear, she has a cold, she is still the happiest ladybug I have ever seen.

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A bit of post-xmas cheer for you all!

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Wales.

That’s what I needed.

I needed my mother-in-law to fix me endless cups of tea. Cups of tea I actually finish, because when the tea arrives I hand the baby off to her and say, something divine like, “I think I’m going to go take a bath.”

“Dim problem!” chirps my mother-in-law in response.

You know what else I needed? Homemade potato and leek soup, piping hot, covered with shredded cheddar cheese. The kind made in advance, in honor of our arrival, in a massive pot that lasts the first three days of our trip. Lunch – any time. Twice in a row if you want it. Dim problem!.

Lastly, the very best part of coming to Wales, my mother-in-law loves May. She thinks May is the smartest baby in the world. There are no therapists or doctors or experts of any kind that could convince her differently.

And, woe be them if they did. “Excuse me!” she’d say sternly, “That’s my granddaughter you are talking about!”

In London, as soon as I walk out my door, I trip over yummy mummies pushing their little geniuses Tristan and Seraphina in buggies that cost more than my car. “He is driving me crazy!” one mother will shout at her friend, “Only a year-and-a-half old and he won’t stop reciting his multiplication tables!” Here in Wales, my darling May is the only baby for miles. I don’t even bump into normal mothers I like, who have normal babies I like, but I can’t help but compare to May.

Here, May is the most incredible baby on the planet. Everything she does is an amazing feat to behold. Every lift of her hand to her mouth something to cheer about. Every kick in the bath something to celebrate.

A very merry Christmas.

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This week, in between medical apppointments, we squeezed in all kinds of new experiences. May giggled to Last Choir Standing finalists ACM gospel choir who were entertaining folks at the hospital. (She says, “Yes!”) She paid a visit to Borough Market a haven of blue cheese and free samples. Yum. (May says, “No!”). She also attended her good friend Anna’s 1st birthday party. (May says, “Yes!)

Finally, May visited the Tate Modern art gallery. It is an ex-power plant; cavernous rooms a stroller can easily negotiate and high ceilings that swallow up baby cries. Mainly, we went to view the enormous canvases painted with bold, primary colors – visual stimulation for May.

Not everyone visiting the Tate Modern was happy to see May. These people fell into two categories:

Type 1: Unlike me and my fellow art aficionados - all wearing tight, black clothing draped with scarves – your baby can’t possibly appreciate high art.

Type 2: What is that pretentious mother thinking? She must actually believe her baby can appreciate this high art!

As an answer, here is May’s response to the all-important question of the day: “Yes May, but is it art?” (Click on each painting to link to the Tate.)

Barnett Newman – ‘Adam’ and ‘Eve’ (Which one is this? May knew.)

[Barnett+Newman+Eve.jpg]

Moaning as if in pain. Could have been a deep, emotional response to the painting or possibly a gassy tummy.

Henri Matisse – The Snail

Matisse_3

Not interested in the least. Sighed loudly. Tucked herself into my shoulder for a quick snooze.

Francis Bacon – ‘Seated Figure’

Squeals of joy! Laughter! Giggles! Bounce bounce bounce. (I told May she should have a deeper appreciation for Bacon’s dark and disturbing works, but she disagreed. Bounce bounce bounce.)

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Every week in January, May already has two or three appointments booked. This includes a new brain scan to test her sight. We have to do the whole thing over again. No word on why.

Also, this week, in addition to appointments Monday, Tuesday and Wednesday, we received a call on Thursday to see a big-wig pediatric metabolic specialist on Friday. That’s right. They called on Thursday and asked us to come in on Friday.

The Boss has been trying to get us an appointment for two months. Though he is now less convinced that May has a metabolic problem, he still wants this doctor to examine her and discuss the possibilities.

May had an EEG. I canceled it.

Snow delayed our train for 40 minutes. Somehow, we arrived at the hospital only 20 minutes late. But, when we checked in at reception, they told us the doctor wasn’t in because of the snow. No one called to let us know. They reimbursed our travel costs and apologised for the inconvenience.

I could care less about the cost or the inconvenience. What about the anxiety of traveling to another miserable hospital to see yet another doctor to hear more bad news and, then being told, you have to do it all over again?

That was yesterday. Today, I received the letter about redoing the brain scan.

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In previous entries, I’ve explained methods I’m using to encourage May to reach, both in exploring our faces during cuddles and exploring the bottle during feeds. May’s arms and the action of reaching are two her weakest areas, but these methods seem to have had some success.

It is interesting how these successes creep up on you. Last week, I wrote an email to May’s physio, concerned that May’s left arm was so much weaker than her right. She has a tendency to pull it towards her chest during tummy time and, I explained, she almost always holds the bottle or my fingers with her right hand when feeding, but never with the left.

How amazing actually, when you think of it! She holds the bottle or my fingers almost every feed now with her right hand. I focus so hard sometimes on what she isn’t doing, that I forget what she is accomplishing.

The reason this struck me so much tonight was that the last couple of days, during her feeds, she has reached up with a very shaky left hand, rested and then gripped my fingers and even pulled the bottle away when she wanted. So now, my work with her left hand is also having an effect, just a week or so behind.

Hurray May and Mama!

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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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We may not know what to call our tree.

But, that is one mighty cute elf bouncing in front of it!

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If I haven’t written anything in the past couple of days, it is because I am so nervous about tomorrow’s meeting with the Boss and the report he will give us on the MRI, that I can think of nothing else.

I don’t want to get bogged down in negative thoughts and entries; I want to focus on all the positive things that May does. I try to remember that it doesn’t matter what the MRI shows since May is May and she won’t regress just because her MRI isn’t perfect. She will still bounce, giggle, and curl herself up into my arms.

But, I am just like any normal mother, and I get as nervous about test results as the next person.

Before I go, I’ll add a few positive things about the past week. We bought May’s first Christmas Tree/Hanukkah Bush (it looks much more like a tree than a bush). Her father has taken her out today to buy decorations. I requested the most gaudy lights he could find. Photos to come…

May has discovered spitting. Thankfully, it is only little “pahs” out her mouth at the moment. Other mothers know spitting leads to huge messes that little ones love to bestow on parents during feed times. In our case, for May, we are pleased, as she is using the muscles of her mouth in a new way. Bring on the mess!

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Today, I made a formal, written complaint to The Royal Pharmaceutical Society of Great Britain about a pharmacist. I’ve copied a shortened version of the complaint here, minus names::

My daughter has severe brain damage. She suffers from epileptic episodes. My daughter took the hospital’s suspension with ease, but when I acquired it at my local pharmacy she refused to swallow it. Clearly, the taste was an issue, and I spent days trying to locate a pharmacy that stocked the hospital’s suspension.

Finally, I called the manufacturer myself. They gave me a list of pharmacies that had used them before. The nearest one was R– Pharmacy.

Initially, the pharmacist gave me a hard time. He said it would take a long time to get. He told me the manufacturer would not supply him and to find someone else. When I arrived with the prescription, he repeated that he didn’t think they would supply him. I asked him if he would call them to ask, but he refused as he said it was too late.

About a week and a half later, he left a message for me to call him. The following day I did. He was very rude to me about not calling him the previous day. I explained that I was at the hospital all day with my daughter. His response was surly and unsympathetic: “I left a message for you to call me. You did not phone.”

He informed me that the medication had an expiry date a month later so he thought it would not be suitable. As I only asked for enough medication to last two weeks, it was clear that this would be okay. I asked him to order it. He again said it would take a long time.

I asked, “If they have it in stock, why it should take so long?”

He very gruffly remarked that he is not the manufacturer and it was out of his hands.

I asked, “Did you call them to say that it is for a newborn baby with severe brain damage who suffers from life-threatening seizures?”

He said, “I faxed the prescription to them. They know what it is for.”

On Monday, I called him again to check the progress of the medication. He yelled at me down the phone several times: “Look I have done my work. I have clearly specified to you. I faxed them after 10 days. You can see the time is spent. I phoned. You didn’t call me back. I phoned you again. When it comes I’ll phone.”

Again, I explained that we had been at the hospital. He said, “This is none of my concern.”

I asked, “Have you told them how urgent this is?”

He said, “It is beyond my control. I have prescriptions to file. Why do you call me?”

Then, he hung up on me.

As I was desperate for the prescription, I called him back and explained that I had spent days trying to track down this specific brand.

He said, “Why do you come to me then? Why not try another pharmacy? I’ve never used this supplier.”

I explained to him that he had used them. That, in fact, the supplier had not only given me his name and pharmacy from their records, but also his address and phone number.

He hung up on me again.

About a week later, he called to say that he would not be getting the prescription in. He called twice and the second time he said he would not be calling me again. He did not explain why the supplier, who he earlier said had the prescription, no longer did. This call came almost three weeks after I initially gave him the prescription.

There is no reasonable excuse for the time between giving in the prescription and him calling to say that it was unavailable, especially when the medicine is a controlled substance, must be special ordered and the life of a newborn baby is at stake.

His actions were not only negligent, but also go against the basic principles of your society:

1. Make the care of your patients your first concern

3. Show respect for others

7.    Take responsibility for your working practices

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