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.