Saturday 29th May 2010

Just read that David Gest raised £10,000 for STEPS - thank you David. For more details please refore to http://www.steps-charity.org.uk/

Saturday 29th May 2010

Life has been plodding along relatively normally...that is, apart from Edward's current disability.  To be honest, because he has adapted so well, we've found the last 4 weeks much easier than we were expecting.  Obviously things are harder - Edward has to tell us where he wants to sit and he changes his mind very frequently but, generally, he hasn't been overly frustrated.  Actually, 'remarkable' is the best word I can find to describe him.

The nights are sometimes problematic - last night was a bad night (wake ups hourly / half hourly from 2.30 - 5.30am) but usually I only have one wake up per night which is very manageable.

My biggest worry is his next surgery this Wednesday 2nd June.  If we only had to stick with what we're used to that would be fine, but another op followed by a further 6 weeks in a spica cast is obviously daunting.

Monday 17th May 2010

We received a phone call from the GP tonight.  This is the GP who saw Edward every other month from the age of 6 months to nearly 2 years and DIDN'T send him for an x-ray.  I'm feeling cross because I was very polite - explained how Edward was coping - but I definitely didn't let her know how cross I am with her....and I really want her to know how upset I am! The problem is, despite everything, I didn't want her to feel bad - which is crazy because she certainly contributed to what Edward is now going through.

Saturday 8th May 2010

One week on and Edward is crawling in his Spica cast.  It looks very uncomfortable but he seems very pleased with his new found freedom.  He's also loving playtime on his tummy with his cars - he really is coping remarkably well.

The sleeping has deteriorated somewhat - particularly if we don't give him a dose of Mediced before bed - but generally he's still sleeping reasonably well.  It's poor Mummy and Daddy who are suffering!

Last night we watched 'Embarrassing Bodies - Kids' on Channel 4.  It featured a 10 month old boy with DDH.  Great to see the condition being discussed but they did seem to gloss over many of the practicalities.  I'm also not completely comfortable about DDH being described as 'embarrassing'!

Saturday 1st May

Just back from our first outing in the car visiting friends.  Edward was in his new car seat - bought in a hurry yesterday when we decided he wasn't secure in the booster seat we were hoping to use.  He seemed comfortable enough until he dropped off to sleep and then he started crying out - as if in discomfort.  It was so lovely to get him back into his cot when we got home.

That said he had a really lovely time visiting friends - great for him to be around the other children.

Just keeping our fingers crossed that tonight is as good as last night - not a single wake up!   He's doing so well - it really is remarkable how quickly he's adapting.

Received an application form for a Blue Badge today - now that we know we're looking at 12 weeks rather than 6 we're hoping that we'll be eligable.

Back at Home - 29th April 2010

Day 1 at home.

Yesterday was a long day with a very different outcome to that which we'd expected.  A better prognosis for Edward in the long run, but it does mean a longer time in the Spica cast.

When we arrived at Queen Mary's it was clear that the surgeon was all set to perform an open reduction to force the femur into the hip socket by scraping, re-shaping and, finally, breaking the femur.  So we were expecting a minimum of 2 nights in the hospital during which time Edward would be on strong pain medicines.

So, it was a real surprise when the surgeon left the theatre to tell us that the femur had popped back into the socket very easily - all much better than we were expecting.

This means that Edward didn't need surgery yesterday but has been set in a cast until 2nd June when an osteotomy will be performed, followed by a further 6 weeks in a Spica cast.  Bad news in the short term but much better for Edward in the longer term.

In the Hospital

Wednesday 21st April 2010

It's been a week since my last post.  In that time we met with a family who have already been through this procedure, we've acquired a Spica chair and we've visited the hospital where Edward will be treated.

I would like to take this opportunity to say a big thank you to STEPS, the charity which has provided invaluable information and put us in touch with parents who have first hand experience of DDH.  It is because of STEPS that we met with Lee and Louise, parents of Freddie (now aged 6), on Sunday.  Freddie had an open reduction aged 18 months and has loaned Edward her Spica Chair - thank you Freddie.

It was also great to have a chat with Freddie's mum and dad and benefit from their experiences - their help is very much appreciated.

On Tuesday we visited St Mary's Children's Hospital in Carshalton with Edward.  The hospital is based at St Helier's - an absolute eyesore - but, as long as Edward is well cared for, we can put up with the unpleasing aesthetics.

And so the scary, unbearable to think about, countdown begins...