Posts made in September, 2012

May’s seizures are back

Posted on Sep 26, 2012 | 5 comments

May’s seizures are back

I would like to say that a seizure for May is unusual, but it is not. When she was a year old, she had over 100 a day. It’s a grizzly fact, and I only mention it to contrast her recent seizure activity. Until late July, she was down to one a month. That is a miracle of modern medicine. This lasted until late July, when she suddenly began to have 10 – 12 a day. We put her medicine up and they went down to about 4 a day. That’s still not great, but better. May’s medicine will need to be adjusted like this for a long time. May eats better now and is gaining weight. More weight means the delicate balance of her seizure medicine will be disturbed. The same will happen if she has a growth spurt. Or later, when she starts puberty. Physical changes will require an adjustment in her medicine throughout her life. This week, May terrified me by having a seizure at school that lasted over two minutes. They normally last about 30 seconds. This seizure was four times longer. I was frantic and I phoned the Boss’ PA to get an appointment. She is on vacation. I phoned the ward directly. He is on vacation too. They put a Pediatric Registrar in Neurology on the phone. He said there would not be an emergency appointment for ten days. “Ten days! No one can see her for ten days?” I pleaded. “That’s right. We are fully booked.” “What do you advise us to do in the meantime?” “If she loses consciousness or has a seizure that lasts longer than 5 minutes, I suggest you bring her into the Emergency Room.” “That’s it?” I asked, preparing for war. “Yes. That’s all I can advise.” “You are telling me the only thing we can do is wait until our daughter needs an ambulance? Do you have any idea how stupid that sounds? That is completely irresponsible! Put someone on the phone who will help my daughter so she doesn’t end up unconscious in an emergency room!” Then, I spoke to someone who raised my daughter’s seizure medicine so that she does not end up unconscious in an emergency room. Sometimes, I speak to doctors and I think I’m speaking to a complete idiot. Want more? READ: There was no Plan B when my girl had a seizure on Stacie’s blog on...

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3 things I now know about May (Whaddya Know? Part II)

Posted on Sep 22, 2012 | 2 comments

3 things I now know about May (Whaddya Know? Part II)

Honestly, when I wrote my last post Three things I forgot about May until I read this, and I recalled how limited May’s motor functions were – both small and large – I really thought I’d be writing a very depressing follow-up post. Because, since May ate the teething biscuit in the last post, has she started feeding herself? No. Can she pick up food? No. Can eat solid food, like a biscuit? No. Okay, so a bit depressing. But, let’s not let it get us down. It’s not appropriate to gauge all of May’s achievements like this. She isn’t necessarily going to improve in the ways I would like her too, or at the speed I would like her to. So whaddya know now, Mama? 1. May can use her arms far more than she could back then. She thrills herself, all the time, by brushing our faces with her hand, or thrusting them forward to hit an instrument. 2. She can wipe her eyes when she is tired or something is in them (like her food, she does try to feed herself) which when you think about it, must be a very satisfying thing to do when you haven’t been able to do it for several years. 3. Part of the reason she held on to that teething biscuit so well was that her hands were far stiffer then, than they are now. They open all the time now and, when they do, out drops whatever she is holding. May is relaxed, happy and more able to use her body than she was a year ago. What more can we ask for? How about a few photos from our day today at – old family favorite – Kew Gardens, in...

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3 things I forgot about May, until I read this

Posted on Sep 10, 2012 | 2 comments

3 things I forgot about May, until I read this

Whaddya hear? Whaddya know? Three things I forgot about until I re-read this archive post from January 2010: How loudly May used to snort. That there ever was a pre-teething phase. The endless exercises we tried to help May hold something to her mouth. And, of course, that May is adorable. Never underestimate May’s superior power of cuteness. In all seriousness, I was reminded today to appreciate every moment. Small moments like these are not insignificant. It was that thought which led me back here. Without further ado: This week I’m… using teething biscuits from the archives, January 6, 2010. _______________________ In our household – we fear teeth. May is readying herself for teething. It is coming. Stick a spoon into her mouth these days and it may not come out. Chomp! Stick finger into her mouth – chomp, chomp! There are benefits to not breastfeeding. This has led to a great triumph. May’s ability to use her hands improved this week because she loves teething biscuits. Easy to grip and, oooooh so sweet! In the video below, I held her under her upper arm, but I didn’t guide her. I steadied her arm, but she did all the work. If she masters this, it could lead to all kinds of amazing things. Better hand control. Reaching for interesting objects. Feeding herself. Congrats to my little monkey! Did this exercise from back in 2010 help May reach her potential in 2012? Find out in the next...

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One story that has received almost no coverage during the Paralympics

Posted on Sep 8, 2012 | 5 comments

One story that has received almost no coverage during the Paralympics

The Paralympics are here and, at least in Britain and many other countries around the world (America not being one of them) – people see disability in a new light. I went to the Paralympics with my family. I enjoyed being a part of it – but it was not an easy day. May was teething and desperate for a bottle and the Olympic Park is the size of Chicago. “Just keep walking,” I said to my husband. “She’s will stop crying when she has a bottle in her mouth and the chance to sleep.” Which turned out to be true, but “just keep walking” resulted in a 40-minute scream fest. When I spoke of our visit to people, I made no mention of the scream fest. Instead, I spoke of how great it was to be a part of sporting history. In other words, much like disability coverage during the Paralympics, I glossed over the hard stuff. Meanwhile, the same week we watched world-class, disabled athletes, we also received a letter from Lambeth saying they would no longer provide SEN transport to children like May. The Paralympics is the show; that letter is the reality. This week, I found one story more troubling than anything I’ve read about all year. Where is the coverage? Languishing in a small column in the back pages of American newspapers. Florida has been removing children with complex medical needs from their homes against their parents wishes to save money. The children are placed in nursing homes for the elderly, often not located hours away from their families and receiving little to any stimulation. Never going outside. Not living with other children. Receiving less than 3 hours of education a week. If May had been born in Florida – they would have attempted to force us to place her in an institution from birth. From The San Francisco Chronicle (and it goes to show how little coverage this is getting that no Florida media outlet has written as lengthy a piece): “the state turned down nearly $40 million in federal dollars for a program that transitions people from nursing homes back into the community. The state has also been paying community-based providers less, reducing payments by 15 percent last year because of legislative budget cuts, the letter stated. Yet the state implemented policies that expanded nursing home care, by offering facilities a $500 enhanced daily rate for caring for children, which is more than double than what the state pays for adults, according to the letter.” So, it didn’t even save the State money and for nursing homes it made money. I read the full Attorney General’s report and their demand for a response from Florida and I sobbed for two hours last night. After, I published a piece about it on BabyCenter, What’s worse: being born disabled, or in Florida?  Readers asked if they could sign a petition against Florida’s barbarism. I’m not sure a petition will do any good against the wave of conservative ideals sweeping America. Will Florida protect its children, or its right to profit off them? I can’t do much from the UK, but I can stand in solidarity with these parents and ask you to do the same by signing and share this petition, and see where it goes from there. Petition to THE STATE OF FLORIDA: Return disabled children and babies to their...

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First day of school (pics!)

Posted on Sep 6, 2012 | 2 comments

First day of school (pics!)

School is back in session. May started school with a big grin. She was very happy to be there, which was a change from the tears that were common at the end of the last school year. Over the summer, I noticed that May needed more naps than Ieuan did – unusual for an older sibling. There is a lot of stimulation at school, so I hope a few extra naps will help. It seemed to do on her first day, at least. May is in the Early Years class AKA Yellow Class. All the students have colors for their class’ name. I like Yellow and all it signifies: bright, cheerful, warm. May’s teacher is the same as last year, and her favorite teaching assistants are back again too. No wonder she was all smiles! Here are some photos....

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