A busy week

Last week my mum and dad were staying so I decided to get some appointments out of the way while I had the chance to leave Malachi with my mum and be chauffeured around by my dad.

On Sunday, Isaac had a birthday party to go to.  Unfortunately I hadn't realised it would be a disco and I'd also forgotten to bring his ear defenders so it was a bit of a disaster and after 45 minutes of Isaac refusing to go more than a few yards away from the entrance we gave up and took him home.  I did get to show off Ezekiel though which was good.

On Monday, Ezekiel had an appointment with audiology followed by another one with Nicola.  He passed the first hearing test.  When it came to the second test there was too much interference so we need to go back next month for another go.  As I was coming out of Audiology I ran into the chaplain who conducted Elisha's funeral.  It was so lovely to see her again and to show her Ezekiel.  Then we went to see Nicola and Julia, the dietician.  They were both really pleased with Ezekiel's progress.  Nicola is going to keep an eye on his weight gain, muscle tone, clicky hip and head size (basically everything except his cleft lip and palate).  Ezekiel's results of his initial genetics tests have come back normal and Nicola also explained why Ezekiel needed CPAP after really good apgar scores.  Basically, the apgar scores show a baby's condition in the few minutes before birth.  So Isaac, who had an initial apgar score of 5 was distressed in the last few minutes of labour but recovered quickly.  Ezekiel was perfectly fine before he was taken out but after 30ish minutes of being born, his lungs got tired and he needed some help.

Will update on the rest of the week tomorrow.

Orthotics, a party, EDS awareness and going back to school

It's been a very busy 2 days for us.  Yesterday Isaac had his orthotics appointment.  We were late because the bus driver refused to let us on because there was a buggy in the wheelchair space.  Don't get me started on that.  The orthopaedic surgeon has decided that piedro boots aren't giving him enough support so he needs inserts in his piedro boots.  When he does pe at school the teaching assistant will take the inserts out of his piedro boots and put them in his plimsoles.

On our way out Jeremiah noticed a sign about a party and free cake.  It was the hospital's 70th birthday and there were lots of 1940's themed stuff going on.  A journalist came and interviewed Isaac and Jeremiah and took photos. http://www.tauntonpeople.co.uk/Musgrove-Park-Hospital-throws-40s-themed-birthday/story-16813667-detail/story.html - this is the story.  http://www.tauntonpeople.co.uk/pictures/Musgrove-Park-Hospital-Taunton-70th-birthday-bash/pictures-16813628-detail/pictures.html - these are the pictures.

Maddy's campaign has spread further.  She won the Pride of Australia award and appeared on television as well.  http://au.news.yahoo.com/today-tonight/health/article/-/14753623/maddisons-disease.  She asks that everyone google Ehlers Danlos syndrome and read about it for 5 minutes.

Today both the big boys went to school.  Malachi and I were nearly late, thanks to the bus, but we got there on time.  Jeremiah went in without a backward glance and Isaac had to be prized off my leg.  He had a good day though, he is absolutely shattered now.  Pictures tomorrow hopefully.

Photos

At Great Grandad's birthday party

The new park on our way home from school has just opened.  We've been twice and I've tried to take photos of Isaac on the swing without much success!

School disco and TOG graduation

I've found my usb thingy so I can put photos from my phone on the computer.  So this blog post will probably be more photos than text.

Jeremiah's school disco was on tuesday.  He started leaping about straight away and Isaac was more cautious.  He got into it in the end though and although it was more like marching than dancing he had a whale of a time.

Isaac is the one in the stripy hat

I wouldn't normally put photos of other children on my blog but there's no way anyone will know who the other child is unless they were there.

Today was Isaac's last day at TOG.  Isaac, Malachi and I went to the christmas party and it was lovely seeing how well the other children were doing and to chat with the other parents.

Malachi in the tumbleform chair that used to be Isaac's

Malachi enjoyed the fibre optic lights (although taking photos when he was sat on my lap wasn't easy!)

Isaac getting his certificate

Isaac with the fibre optic lights

We all had a lovely time and Isaac particularly enjoyed snack time as usual.  It was a bit weird having Malachi there doing a lot of the things Isaac did when he first started, kind of like the ghost of christmas past!  In a way it was sad to be going for the last time but it's a huge milestone that he doesn't need to be there anymore.