She now has a facebook page and has been on the news and in the newspapers in Australia.
https://www.facebook.com/groups/409596975764766/#!/MaddysEhlersDanlosSyndromeLetterToTheWorld
Please like her page, share it on your facebook/blog and help raise awareness of Ehlers Danlos Syndrome
Wednesday 29 August 2012
Thursday 23 August 2012
Things we haven't done yet
During the summer term if the older boys want to do something that's going to take up a lot of time I often tell them we will do it in the holidays. At this stage of the holidays we usually realise we haven't done most of it! So this week we have been to Upper Holway play area and French Weir park. Just got playing in the ball pool, making new all about me books and tie dying t-shirts to do before they go back to school.
Sunday 19 August 2012
Playing quidditch
Well, the 4th week of the holidays has gone and we have mostly been playing quidditch in the garden. Everyone riding on brooms, mops, toy golf clubs etc. Trying to get the football (quaffle) in the trampoline net while also trying to find the bouncy ball (snitch) in the grass. It has mostly been just me, Jeremiah and Isaac playing but today I sat Malachi on a broom and ran around with him and he was shrieking with excitement so I must make sure I help him play again next time. Simon's Dad also played and spent some time moving the snitch around which make it more fun as the games were lasting longer and more chance to score goals.
Yesterday Simon, his dad, Jeremiah and Isaac went on a 6 mile hike. Simon spent most of the time trying to get the wheelchair through the mud and I had to clean the wheelchair afterwards but I'm glad Isaac was able to be included. Today on the radio they were talking about the paralympics and someone mentioned wheelchair rugby so I think I got off lightly. I wouldn't want to clean a rugby players wheelchair!
Yesterday Simon, his dad, Jeremiah and Isaac went on a 6 mile hike. Simon spent most of the time trying to get the wheelchair through the mud and I had to clean the wheelchair afterwards but I'm glad Isaac was able to be included. Today on the radio they were talking about the paralympics and someone mentioned wheelchair rugby so I think I got off lightly. I wouldn't want to clean a rugby players wheelchair!
Monday 13 August 2012
Tiny shoes
Malachi's piedro boots, size 17 in european sizes. I think this is a size 1 or 3-6 months in english sizes.
Not sure where the pink stripe came from. And the jubilee building under construction.
The orthotist managed to sort Isaac out at the same time which was nice. He now has some black piedro boots on order with velcro fastenings (I never knew they did them with velcro fastenings) and he thinks inserts to be worn inside his plimsolls/daps will be what he needs for PE but he needs to check his notes first. All in all a very successful appointment.
Not sure where the pink stripe came from. And the jubilee building under construction.
The orthotist managed to sort Isaac out at the same time which was nice. He now has some black piedro boots on order with velcro fastenings (I never knew they did them with velcro fastenings) and he thinks inserts to be worn inside his plimsolls/daps will be what he needs for PE but he needs to check his notes first. All in all a very successful appointment.
Sunday 12 August 2012
19 months
Malachi is 19 months old today and I am still breastfeeding him. I am beginning to hope we might make it to 2 years this time.
Friday 10 August 2012
This is how he rolls
Today we went into wellington to get more photos developed for the holiday scrapbooks and to buy a few bits from ASDA. Isaac walked for the first part and then got into his wheelchair for a rest. While we were going round ASDA, I took this photo:
They looked so funny, Jeremiah driving like a racing driver and Isaac sat calmly reading a magazine!
They looked so funny, Jeremiah driving like a racing driver and Isaac sat calmly reading a magazine!
Thursday 9 August 2012
Photos
Because I keep forgetting to include photos with my posts.
Malachi playing with his jumping frog
Reading
Jeremiah and Isaac waiting for a bus in the rain
Wednesday 8 August 2012
Orthopaedics
Yesterday Isaac had his appointment with the orthopaedic surgeon. We got there early because the buses are so unpredictable and I'm glad we did because we got called in 20 mins before his appointment time. We took the ergo and the wheelchair and I found the ergo so much better than my other baby carrier. I think carrying him on my back will be better though as it's tricky paying the bus driver while trying to stop little hands from getting in my purse!
Isaac was still tired from his holiday 2 weeks ago and he was reluctant to show the dr his walking skills. But I managed to persuade him to get off the examination couch where he was trying to fall asleep and walk around the room. The dr agreed with me and the GP about his ankles being too unstable for him to wear plimsoles/daps for PE at school and so he needs to see the orthotist to sort out something. We already have an appointment with the orthotist on 3rd september to measure his feet for new piedro boots so we are going to have the PE shoes appointment then as well. We came out 10 mins before our appointment time so after a quick detour to the hospital shop for the older two to choose some sweets we came home. We were only gone for an hour and a half which has to be a new record.
Isaac was still tired from his holiday 2 weeks ago and he was reluctant to show the dr his walking skills. But I managed to persuade him to get off the examination couch where he was trying to fall asleep and walk around the room. The dr agreed with me and the GP about his ankles being too unstable for him to wear plimsoles/daps for PE at school and so he needs to see the orthotist to sort out something. We already have an appointment with the orthotist on 3rd september to measure his feet for new piedro boots so we are going to have the PE shoes appointment then as well. We came out 10 mins before our appointment time so after a quick detour to the hospital shop for the older two to choose some sweets we came home. We were only gone for an hour and a half which has to be a new record.
Saturday 4 August 2012
My new ergo is here!
So after a lot of dithering I finally bought an ergo baby carrier in a very fetching shade of cranberry. It arrived today and I've been having fun trying it out. According to the instructions the weight limit is 20kg which means technically I could carry Jeremiah and Isaac in it. I did try it with Isaac in but it was so low round his back that I decided not to try Jeremiah in it.
Malachi loves it and he feels so much lighter in it than he did in the 2nd hand mothercare one. I think it will be more comfortable with him on my back but I'm not brave enough to try that yet.
Malachi loves it and he feels so much lighter in it than he did in the 2nd hand mothercare one. I think it will be more comfortable with him on my back but I'm not brave enough to try that yet.
Thursday 2 August 2012
out and about
After 2 days at home I decided to take the boys into wellington to get Malachi weighed, buy a few bits in ASDA, get some photos printed and hopefully run into some people we know from school, preschool etc while we were there. Not literally run into, although with Jeremiah pushing the buggy it was fairly likely!
We got Malachi weighed and measured at the childrens centre (8.77kg, 73cm). He'd lost a tiny bit of weight and his length had slowed down a bit but as he'd eaten quite a lot just before the last weigh in and hadn't this time I wasn't worried. He is now following the 2nd centile for weight and is 2.5cm below the 0.4th centile for height. Nicola and the dietician are still convinced that if he puts on loads of weight he will catch up in length but so far that hasn't happened. But as he is no longer failure to thrive the various professionals aren't panicking about his weight so we will carry on with the small amount of infatrini he is on and keep weighing him every month.
While we were in the childrens centre the builders at the school next door set off the smoke alarm so we all had to troop outside to the park and wait to be let back in. Isaac in particular wasn't impressed until the fire engine turned up!
On the walk back into town one of the front wheels of Isaac's wheelchair fell off going up a kerb and Jeremiah ran over a piece of glass and a thorn with the buggy which proved to much for the slime filled inner tubes. I managed to get the wheelchair wheel back on. It's the 2nd time it's happened so I knew what to do but I'll be phoning the engineers today to get them to come and have a look as it's not very safe and if the bolts fell down a drain when the wheel flys off another time we could end up stranded. We were only a little way from the bike shop by this point so I pushed the buggy while Jeremiah pushed the wheelchair, trailing slime as we went.
So it was an eventful trip out but we did end up meeting 4 friends which was nice. Getting out and about is hard with all 3 of them and the wheelchair etc but I'm glad we did it. Internet shopping is all very well but I think we all needed a change of scene and to talk with different people. We're off to the hospital on Tuesday which will be a good opportunity for Isaac to practice self propelling on the shiny floors.
We got Malachi weighed and measured at the childrens centre (8.77kg, 73cm). He'd lost a tiny bit of weight and his length had slowed down a bit but as he'd eaten quite a lot just before the last weigh in and hadn't this time I wasn't worried. He is now following the 2nd centile for weight and is 2.5cm below the 0.4th centile for height. Nicola and the dietician are still convinced that if he puts on loads of weight he will catch up in length but so far that hasn't happened. But as he is no longer failure to thrive the various professionals aren't panicking about his weight so we will carry on with the small amount of infatrini he is on and keep weighing him every month.
While we were in the childrens centre the builders at the school next door set off the smoke alarm so we all had to troop outside to the park and wait to be let back in. Isaac in particular wasn't impressed until the fire engine turned up!
On the walk back into town one of the front wheels of Isaac's wheelchair fell off going up a kerb and Jeremiah ran over a piece of glass and a thorn with the buggy which proved to much for the slime filled inner tubes. I managed to get the wheelchair wheel back on. It's the 2nd time it's happened so I knew what to do but I'll be phoning the engineers today to get them to come and have a look as it's not very safe and if the bolts fell down a drain when the wheel flys off another time we could end up stranded. We were only a little way from the bike shop by this point so I pushed the buggy while Jeremiah pushed the wheelchair, trailing slime as we went.
So it was an eventful trip out but we did end up meeting 4 friends which was nice. Getting out and about is hard with all 3 of them and the wheelchair etc but I'm glad we did it. Internet shopping is all very well but I think we all needed a change of scene and to talk with different people. We're off to the hospital on Tuesday which will be a good opportunity for Isaac to practice self propelling on the shiny floors.
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