Well we are home. I will document the rest of joes story at some point in the future, but we have been home since December and we are catching up with life.
We are still doing Waldorf and Harriet will complete her first grade in the summer, it took us two years as she was six not seven when we started it do we've did it at a slow rate.
This week is our first busy week since coming home gymnastics cookery class and today a tudor day at the museum of Kent life and little Joe is coming too.
Tuesday, March 13, 2012
Wednesday, May 25, 2011
What do you see?
Its been nigh on five months since my last post. The words "or this may be the slow slide back into heart failure" were may be a mothers instinct.
Joe was admitted to hospital on 25th january and he hasnt been home since, hes now at Great Ormond Street waiting the long wait for a new heart.
Hes taught us so much about life and how to live it, and hes also taught us that some times life just goes on (he survived seven arrests on 26th Febuary) and he is now on a Berlin Heart. Our home education and our lives go on around his day to day needs as we wait for the gift of life.
Rachel
Joe was admitted to hospital on 25th january and he hasnt been home since, hes now at Great Ormond Street waiting the long wait for a new heart.
Hes taught us so much about life and how to live it, and hes also taught us that some times life just goes on (he survived seven arrests on 26th Febuary) and he is now on a Berlin Heart. Our home education and our lives go on around his day to day needs as we wait for the gift of life.
Rachel
Monday, December 27, 2010
Winter
Its 9.45pm Joe is fast asleep on the sofa having one of his non specific sweats and I am tidying up awaiting grandparents arrival in the morning.
We have had a bit of a landmark here we have had Joe home for a whole christmas with no festive hospital admissions.
Joe is doing well as far as it goes, but he has valves in his heart that are starting to leak of course it may be nothing at all but it may also signal of the slow slide back into heart failure.
For me this christmas has been healing and a time to do things that we promised Harriet the year Joe was born the London eye (which broke down when we went on it last week) the christmas markets on the south bank the chance to do family things together.
We have had an amazing year with a trip to florida to meet other boys with joes syndrome. A trip to disney and seaworld. We have met the best doctors in the world with regards to dealing with this disorder and Harriets has learned she one sibling of many not one on her own.
Our respite is now 4hrs a week but only till March and Harriet will come back to full time home education in April as we look towards a move to the west country.
Life can still be very Hard, often made so by those who are meant to be helping, the physio who thinks hes just being lazy because hes not walking, the local hospital that dont have appropriate cardiac monitoring equipment and claim it cant be borrowed from the adult service, lack of communication all the time that leaves me as go between and secretary all the time, but onwards and upwards we go, we do so hope a move will make things easier and less stressful in the long term.
its been a good one! Long may it continue!
We have had a bit of a landmark here we have had Joe home for a whole christmas with no festive hospital admissions.
Joe is doing well as far as it goes, but he has valves in his heart that are starting to leak of course it may be nothing at all but it may also signal of the slow slide back into heart failure.
For me this christmas has been healing and a time to do things that we promised Harriet the year Joe was born the London eye (which broke down when we went on it last week) the christmas markets on the south bank the chance to do family things together.
We have had an amazing year with a trip to florida to meet other boys with joes syndrome. A trip to disney and seaworld. We have met the best doctors in the world with regards to dealing with this disorder and Harriets has learned she one sibling of many not one on her own.
Our respite is now 4hrs a week but only till March and Harriet will come back to full time home education in April as we look towards a move to the west country.
Life can still be very Hard, often made so by those who are meant to be helping, the physio who thinks hes just being lazy because hes not walking, the local hospital that dont have appropriate cardiac monitoring equipment and claim it cant be borrowed from the adult service, lack of communication all the time that leaves me as go between and secretary all the time, but onwards and upwards we go, we do so hope a move will make things easier and less stressful in the long term.
its been a good one! Long may it continue!
Sunday, December 12, 2010
Summing up a term.
This term Harriet did two full days a week at school and we worked through the first term of christopherous curriculum (waldorf).
In School - Her report for the term was excellent! However she needs to work on her handwriting and creative story writing. (im not going to start on my view that she is only six!)
At Home - She attends Gymnastic and is working towards her first badge. She also attends a drama class each week.
English Language and Literature - We have worked through a unit study on the grinch who stole christmas. This included comprehension and both reading the book and watching the film. She has practiced writing up science experiments and writing her own short stories. With reading her has progressed to 7B on ORT and is reading classic tales such as Jack and the Bean stork at home. We have started reading the unabridged version of The Secret Garden at bedtime.
We have worked on making sure her knowledge of sounds and blends is secure and that she can match capital and lower case letters.
We also watched and discussed the Christmas Carol.
Maths - We are working on firm foundations of skills including addition up to 1000 Subtraction up to 100 and she is now confident on 2,3,4,5,10,11 times tables. She also has a working knowledge of plane and 3D shapes.
History - We have completed a lap book on will adams.
Geography - we have looked at physical and emotional needs of human beings living all over the world. Including finding countries and continents on a Map and Globe.
Science - floating sinking disolving non newtonian fluids tree life cycles looking at autumn.
PE - Gymnastics trips to park and soft play.
Cookery - baking of cakes and breads the action of yeast and what kills it.
We are now looking at winter festivals in our run up to christmas.
We have found that some of the waldorf curriculum has gone by the wayside and we need to both paint and do handicraft as a proirity next term.
In School - Her report for the term was excellent! However she needs to work on her handwriting and creative story writing. (im not going to start on my view that she is only six!)
At Home - She attends Gymnastic and is working towards her first badge. She also attends a drama class each week.
English Language and Literature - We have worked through a unit study on the grinch who stole christmas. This included comprehension and both reading the book and watching the film. She has practiced writing up science experiments and writing her own short stories. With reading her has progressed to 7B on ORT and is reading classic tales such as Jack and the Bean stork at home. We have started reading the unabridged version of The Secret Garden at bedtime.
We have worked on making sure her knowledge of sounds and blends is secure and that she can match capital and lower case letters.
We also watched and discussed the Christmas Carol.
Maths - We are working on firm foundations of skills including addition up to 1000 Subtraction up to 100 and she is now confident on 2,3,4,5,10,11 times tables. She also has a working knowledge of plane and 3D shapes.
History - We have completed a lap book on will adams.
Geography - we have looked at physical and emotional needs of human beings living all over the world. Including finding countries and continents on a Map and Globe.
Science - floating sinking disolving non newtonian fluids tree life cycles looking at autumn.
PE - Gymnastics trips to park and soft play.
Cookery - baking of cakes and breads the action of yeast and what kills it.
We are now looking at winter festivals in our run up to christmas.
We have found that some of the waldorf curriculum has gone by the wayside and we need to both paint and do handicraft as a proirity next term.
Monday, December 06, 2010
A Day in our lives
6.30 am alarm goes off.......snooze I have to be good about this it very easy to hide under the duvet and not surface till the kids wake.
6.40am alarm goes off again up shower coffee. I hope to get my coffee in peace before im disturbed it rarely happens.
7.15am kids awake Joe has milk and breakfast harriet has breakfast put house to rights. The breakfast thing with joe is a battle hes not interested in food at the moment, so it takes a while.
8.30am Joes medication
8.45am lay out anything we will need for school. Including collecting together rescourses,
9.00am -12am school time punctuated with 20 minute break Joes 10.30 meds Joes protein meals.Joe plays and is read to while Harriet works. Today we did verbs and nouns singular and plural did reading practice from level 7 oxford reading tree and completed our fairy tale unit.
12pm - 1pm tidy up and lunch (tv on)
1pm -2.30pm Joe nap Harriet Knitting or handcraft and art and craft. today harriet made her own ink stamps did collage with glitter and made early cristmas gifts for daddy and I.
2.30pm Joe and Harriet snack Joe medication.
3.00pm ourdoor time its freezing so it was a short walk to the swings and home again quick.
4.30pm Harriet Reads and Joe has therapy time. we are working on walking with out holding on the take at the moment is NO! followed by a firm sit down......
5.30pm Tea Joe still not eating well so again it took lots of time a bribery
6.00pm Baths
7.00pm Bed
8.30pm yet more medication and the dreaded starch which he didnt take.....
9.30pm starch again and again at 10.30pm and 11.30pm half taken by 12.30pm. me off to bed alarm set for 3.30am more milk given and sleeeeeep till the next alarm...
We are now comfortably in a routinue. Whcih works for all of us, Joe now loves cooking with his cooker nursery rhymes and being read too he also likes spooning pouring and generally playing with dry lentils............
6.40am alarm goes off again up shower coffee. I hope to get my coffee in peace before im disturbed it rarely happens.
7.15am kids awake Joe has milk and breakfast harriet has breakfast put house to rights. The breakfast thing with joe is a battle hes not interested in food at the moment, so it takes a while.
8.30am Joes medication
8.45am lay out anything we will need for school. Including collecting together rescourses,
9.00am -12am school time punctuated with 20 minute break Joes 10.30 meds Joes protein meals.Joe plays and is read to while Harriet works. Today we did verbs and nouns singular and plural did reading practice from level 7 oxford reading tree and completed our fairy tale unit.
12pm - 1pm tidy up and lunch (tv on)
1pm -2.30pm Joe nap Harriet Knitting or handcraft and art and craft. today harriet made her own ink stamps did collage with glitter and made early cristmas gifts for daddy and I.
2.30pm Joe and Harriet snack Joe medication.
3.00pm ourdoor time its freezing so it was a short walk to the swings and home again quick.
4.30pm Harriet Reads and Joe has therapy time. we are working on walking with out holding on the take at the moment is NO! followed by a firm sit down......
5.30pm Tea Joe still not eating well so again it took lots of time a bribery
6.00pm Baths
7.00pm Bed
8.30pm yet more medication and the dreaded starch which he didnt take.....
9.30pm starch again and again at 10.30pm and 11.30pm half taken by 12.30pm. me off to bed alarm set for 3.30am more milk given and sleeeeeep till the next alarm...
We are now comfortably in a routinue. Whcih works for all of us, Joe now loves cooking with his cooker nursery rhymes and being read too he also likes spooning pouring and generally playing with dry lentils............
Sunday, November 14, 2010
Catching up July
We started July with a Hospital admission.
12hrs 14 blood tests and hes definatly not hypo.
Was a bit (alot!) stressful as no one seemed to know what the plan was, three Drs three plans.
Sent home on 1.30am corn starch, thanks for that made our sleep worse not better.
12hrs 14 blood tests and hes definatly not hypo.
Was a bit (alot!) stressful as no one seemed to know what the plan was, three Drs three plans.
Sent home on 1.30am corn starch, thanks for that made our sleep worse not better.
Tuesday, September 28, 2010
Working timetable
A working timetable for Harriet (and Joe!)
Monday 8.30 - 10.30 main lesson 1-2 gym 3-4 maths and reading
Tuesday out for the morning for trips and activity 2-5 a late main lesson
Wednesday School 9.15-3.00
Thursday School 9.15-4
Friday 8.30 - 10.30 main lesson 11.00-12.00 French 1-3 science
Total Hours 22hrs
Work in progress.
Joe need at least 30 minutes therapy a day
We need to get out every day.
Working through Christopherous grade 1 slightly faster than recommended we shall see how it goes.
Monday 8.30 - 10.30 main lesson 1-2 gym 3-4 maths and reading
Tuesday out for the morning for trips and activity 2-5 a late main lesson
Wednesday School 9.15-3.00
Thursday School 9.15-4
Friday 8.30 - 10.30 main lesson 11.00-12.00 French 1-3 science
Total Hours 22hrs
Work in progress.
Joe need at least 30 minutes therapy a day
We need to get out every day.
Working through Christopherous grade 1 slightly faster than recommended we shall see how it goes.
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