Posts made in July, 2012

Okay, but would you still go private if you knew it cost this much?

Posted on Jul 28, 2012 | 21 comments

Okay, but would you still go private if you knew it cost this much?

Here in Britain, it is easy to forget just how much medical care costs. We think of the NHS as “free” since it is, on the point of delivery. Of course, it isn’t “free” – nothing like it. It is no wonder we appreciate the NHS. It is one of the best health care systems in the world, and we never have to worry about being turned away because we can not pay. It must have been completely baffling for people around the world to see Great Ormond Street Hospital (a London children’s hospital where May is seen for her vision) and, most prominently, the NHS featured as part of the London 2012 Olympic Ceremonies. But, in my house, we cheered. We were at an equally good hospital, The Detroit Children’s Hospital, with May when she was three months old and saw for ourselves a little boy discharged, not because he was ready, but because his insurance ran out. Such cruelties will never happen to May. The downside is, that sometimes – rarely – the NHS doesn’t work and when that happens, we are out of luck. Unless, we go private. This probably seems like the obvious solution. If the NHS doesn’t provide, pay for it. Health is too important to mess around with. I did it myself, and continue to do so, with May’s private physio. It is very costly, but we can’t afford to do anything else for May. We are at those crossroads right now. May has already waited nine months to see a specialist about her hips. Most readers of the post felt that we should go private. But, what would you do if you knew exactly how much it would cost? Yesterday, I received an emailed estimate. Here is how it added up (USD conversion correct as of today): Initial appointment = £250 ($394) Follow-ups = £175 ($275.56) Up-to-date x-rays = £242 ($381.07) Total = £667 ($1050.29) That does not include surgery. If it comes to that. And, I don’t even want to think about how much that would cost. The email with the costs, included the specialist’s advice that we wait. He said another doctor is joining his team in September which should alleviate the strain and allow May to be seen as early as October. Now, what would you...

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Would you pay privately or stick with the NHS?

Posted on Jul 25, 2012 | 11 comments

Last October, May was referred for a routine hip x-ray that all children with cerebral palsy receive. It showed that her hip joints were not developing properly. May’s were displaced by 35% and 40%. If that sounds bad, that’s because it is. It is really bad news. The thigh bone curves into the socket of the hip through the pressure of walking and standing. May does little to none of either of these. Back in October, she did even less. She had no standing frame and a terrible physiotherapist. Now, thankfully, we are one week away from a walker. That’s progress. But, is it enough to avoid surgery on her hips? That is where a specialist pediatric orthopedic surgeon comes in. He will advise on whether she needs the surgery, but also advise on how to avoid it if possible. May had the x-ray in October, we have been waiting ever since for an appointment and have now been told the earliest possibility is the end of the year. That is a 14-month wait, at the earliest. It turns out the specialist also holds private clinics at private hospitals. I emailed his PA. I said, “My daughter should be seen on the NHS. It shouldn’t have to become a situation whereby we have to pay to see [him] within a reasonable amount of time, but if it is – then sign us up.” I shouldn’t have said that last bit. We can’t afford it, so what’s the point? She wrote me back a lengthy and thoughtful response. She explained all the different ways the specialist, as head of service, was trying to alleviate the waiting times. He sounds as frustrated as we are. Then she wrote, “I know this doesn’t help your immediate situation but I did want you to know that it is always being taken very seriously and everything that can be done is being done. [He] has a private clinic on some Fridays and if families have insurance or are happy to pay (not necessarily you I know) then that as well goes some way towards taking those children away from the NHS and so relieving the burden slightly.” And, here is where our views divide. Because, she offered us a private appointment as early as three weeks from now, with four dates to choose from. Does running a private clinic once a week alleviate the burden on the NHS? I can’t think it does anything but further extend the waiting list and provide faster access for children in better financial situations, rather than more pressing health needs. We’ve never been in this situation. Sure, we’ve had to wait months for an appointment or argue to see who we wanted, but never made to wait over a year to be seen. I’ve asked her for a cost breakdown. Assuming that it is at all reasonable, what should we do: pay privately or stick with the...

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Walking and giggling. That’s how we do it. (VIDEO)

Posted on Jul 21, 2012 | 5 comments

Walking and giggling. That’s how we do it. (VIDEO)

At this point, the video of May walking for the first time has been viewed almost 5,000 times. That is a lot of happy tears, people. But, how did we get here? How did we go from a baby who we thought would leave the hospital attached to machines, to a toddler walking in a walker? First of all, mainly it is just luck. (If you can call being a half-brained baby luck… work with me here.) Luck that May loves bouncing. Luck that May has strength and control of her legs. Luck that she was born to us (and I mean that. That’s not ego. There are a lot of children that are born like May, but in much worse circumstances. How do they progress?) Everything else that helped wasn’t a miracle. It was work. Stretches, activities – lots of bouncing. But, in my opinion, there were a few things that happened in the last nine months that changed everything: 1. Changing May’s physiotherapist. What a difference that made. We use Kiki’s Children’s Clinic in Clapham, London. 2. May’s standing frame. I was resistant to May being in a standing frame, which I imagined was some kind of restraining device in the manner of Anthony Hopkins in Silence of the Lambs. May’s old physio should have done more to convince me, but she pussy-footed around it and that meant months and months of delays. Instead, it was @Therextras who answered my questions. (Her blog is down, but you can still read some of her articles on www.blogher.com/member/therextras). And, May’s new physio who suggested which standing frame to use. I am very grateful to them both. 3. May straddling our leg to do bouncing. As May grew heavier, we could no longer let her bounce by supporting her under her arms. Straddling our leg was the answer. She loves it, but it also means she learned to use her legs alternatively. You can watch a video of her doing it here: It’s ALL fun and games. Finally, it was the equipment. The Leckey KidWalk is no ordinary standing frame. The walker is very responsive. If May moves even a bit, the KidWalk will too. But, it doesn’t let her fully extend. She is kept in good alignment and healthy. This video, taken directly before the walking one, shows how May is strapped in. Look closely at how the harness moves with her. One more thing! This time there was no war – not even a battle or a cat fight. May’s team already have a spare Leckey Kid Walk in their building. When they saw the video, they organized it’s delivery on July 30th. I can’t wait. Imagine how May will...

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Milestone for May! Her first steps! (VIDEO)

Posted on Jul 18, 2012 | 28 comments

Milestone for May! Her first steps! (VIDEO)

There are moments to cherish. And, then there are moments that shape the current of your life. This is one of those for me. May NEVER used a walking frame before today. This is her, one minute in. I love May. Her world expanded today. Now, it includes a step, three steps – perhaps even a stroll – beyond herself. It’s within her reach. One bounce at a time. *The walking frame we used is called a Kid Walk by Leckey. More to come in a future...

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Ieuan’s first birthday (pics!)

Posted on Jul 16, 2012 | 4 comments

Ieuan’s first birthday (pics!)

Ieuan’s first birthday was on July 5th, just over a week ago. It will sound like a complete cliché, but he really did make me happy. The sound of his healthy cry, was the beginning of a new life for both of us. Another cliché. Who cares? It is beyond my abilities to sum up my love for him. Thank you, Ieuan. Veering entirely from the main subject matter of this blog, here are some photos from his big...

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