I'm Sophie, married to Simon and mum to Jeremiah (10), Isaac (8), Malachi (5), Ezekiel (3) and Zechariah (2). Also our 2 little ones in heaven, Eleanor (2005) and Elisha (2011).
Jeremiah has Autism.
Isaac has hypermobility syndrome/Ehlers Danlos type 3 and uses a wheelchair for anything other than very short distances.
Malachi has hypermobility and wears piedro boots to support his ankles
Ezekiel has a cleft palate, hydrocephalus, hypotonia and development delay
Zechariah was born with sepsis and has mild development delay.
Saturday, 22 September 2012
When I pick up Isaac at 1:00 I have the opportunity to be a fly on the wall at playtime. Jeremiah seems to spend a lot of time running round in circles and Isaac seems to spend a lot of time sat on the playground wall being hugged by at least one of the older girls.
Nothing else to report apart from that Malachi has a cold which has upset his reflux. So I'm spending most mornings washing bedding and scrubbing the cot.
Monday, 17 September 2012
Malachi has got a cold and he is really wheezy again. He isn't as bad as last time, probably because I started him on his inhaler as soon as the wheezing started rather than dithering and then waiting for a GP appointment. I think he will probably get an asthma diagnosis at some point. Partly because Ehlers Danlos Syndrome affects his core muscles and partly because Simon and I both have it.
Isaac will be going to school 9-1 this week and next week. Hopefully he will manage the extra hour ok. He has been very tired but he is determined to walk as much as possible. We take the wheelchair with us everywhere just in case and on most journeys he will get in for a rest at some point.
Wednesday, 12 September 2012
This week has been busy. Yesterday Isaac went into school without crying for the first time. Malachi and I went to the toddler group at the sports centre where we ended up seeing Simon's cousin's wife and her little girls which was a nice surprise. I got to have squishy newborn cuddles and then she needed feeding so I ended up playing with Evie and Malachi on the bouncy castle. Somehow in the last 20 years I have lost the ability to stay upright on those things!
Then it was a quick dash across town to pick up Isaac from school, home, lunch, pick Jeremiah up, cook tea and put the children to bed. Today is my housework day so I've been trying to fight the tiredness and get some jobs done. Isaac is also fighting tiredness and is now in a "high as a kite" mood. School again tomorrow.
Saturday, 8 September 2012
And now it's the weekend and I have mostly been doing housework and recharging my batteries ready for another busy week. I have been struggling with carrying Malachi while pushing Isaac in his wheelchair. The ergo is a lot better than anything else I've tried but however I do it a 19 month old is heavy. I've managed to get him on my back once and that was better but I haven't been able to do that since. Malachi likes to fling himself backwards at the crucial moment which makes me nervous. I have discovered a babywearing group fairly near us so I will try and get to the next meeting.
Tuesday, 4 September 2012
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.
Sunday, 2 September 2012
Tomorrow we will be going to the hospital to pick up Isaac's piedro boots and hopefully something to support his feet in PE. The name labels have arrived and I just need to iron them into their uniforms. We are ready for school to begin although I know I would rather have more holiday.
However the school is not ready for Isaac. The grab rails haven't been put in, the steps haven't arrived, the toilet seat isn't here and nor is the step for the toilet seat. His chair assessment hasn't been done and they haven't applied for extra funding yet. The adaptations will be sorted by the end of the week, I have been told and in the meantime the class TA will be taking Isaac to the toilet, holding his hand when he goes up and down steps and trying to avoid him being squashed. And I am repeating to myself that he will only be going to school for 6 hours a week and trying not to panic.