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!
Monday, December 27, 2010
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.
Sunday, September 26, 2010
Catching up Blog 1 New Term
We started our new term on 1st September and slowly worked into what will be Harriets Yr2.
We have changed spec completely and we are now using Christopherous Grade 1 as our template it works better with everything else that goes on in our lives.
So we have started recorder and form drawing and working with wool, I also need some reasonably priced carding combs...........
We have been observing autumn as well as it happens all around us.
We are planning to do short projects on Autumn, Will Adams,Halloween and Christmas this term.
I have also signed up for the first three years waldorf course in London starting in November.
We have changed spec completely and we are now using Christopherous Grade 1 as our template it works better with everything else that goes on in our lives.
So we have started recorder and form drawing and working with wool, I also need some reasonably priced carding combs...........
We have been observing autumn as well as it happens all around us.
We are planning to do short projects on Autumn, Will Adams,Halloween and Christmas this term.
I have also signed up for the first three years waldorf course in London starting in November.
Friday, July 02, 2010
Dear Professional
I am a child a toddler a little boy, I am neither a case study, nor am I odd.
I am a brother and a son my Mummy and Daddy and big sister know me best they dont follow any advice unless its best for me no matter who said it or wrote it.
I do and I play and I try to run my boots help lots as does my frame they dont disable me they let me get on with playing.
I learn and I laugh and I try to read books I dont need a special needs nursery what ever the books may say.
Im getting bigger and stronger all the time and my hearts a lot better now but Mummy and Daddy still worry when the drugs are stopped as they are scared I might be sick again but the doctors still say it wont happen.
I get less infections now as I have injections now to help me fight infections but I wish people didnt say I dont need magic cream as I dont understand I understand it hurts.
Mummy still insists on waking me at night for feeds but I cry and complain as I dont want them but Mummy still trys as the Doctors say she has too.
Im off to hospital next week I wonder what I will have to write about then
Joe
I am a brother and a son my Mummy and Daddy and big sister know me best they dont follow any advice unless its best for me no matter who said it or wrote it.
I do and I play and I try to run my boots help lots as does my frame they dont disable me they let me get on with playing.
I learn and I laugh and I try to read books I dont need a special needs nursery what ever the books may say.
Im getting bigger and stronger all the time and my hearts a lot better now but Mummy and Daddy still worry when the drugs are stopped as they are scared I might be sick again but the doctors still say it wont happen.
I get less infections now as I have injections now to help me fight infections but I wish people didnt say I dont need magic cream as I dont understand I understand it hurts.
Mummy still insists on waking me at night for feeds but I cry and complain as I dont want them but Mummy still trys as the Doctors say she has too.
Im off to hospital next week I wonder what I will have to write about then
Joe
Sunday, May 23, 2010
Forwards and Backwards
I now am looking forward to a month of appointments and a large amount of planning needs to be done to get the best outcomes.
On Tuesday we are seeing an osteopath,the physio identified a tight upper spine months ago but it hasnt been worked on in any way, so I have decided to get a second view.
On Wednesday we have phsyio and I need to sort out boots for Joe his feet are far too small size 1.5 for us to get off the peg shoes that he can walk in he also has oddly shaped feet so we get this sorted asap. I am also hoping that boots will stop him rising to stand on the lateral borders of his feet not his soles.
On 10th June we are seeing cardiology for a scan and a medication review, I need paperwork for our holiday information on fluids restrictions and sun sensitivity with his drugs.
We are then at the childrens hospice from 14th to the 17th June.
On 25th June we have the biggy, we see his metabolic team, from this meeting we need a totally revised feeding plan and a revision of night feeds, he is basically getting to many calories from his milk and as he virtually refuses to drink anything else its giving me serious issues.
We need an update prescription that includes lancets and glucose monitor strips.
And the huge issue we need a care plan for use in an emergency at the local hospital which is both comprehensive and signed by a consultant, having had three occaions where he has had a temp of 39.5 and has had no antibiotics given we need something in writing before he becomes septic because no one listened..........
wish me luck......
On Tuesday we are seeing an osteopath,the physio identified a tight upper spine months ago but it hasnt been worked on in any way, so I have decided to get a second view.
On Wednesday we have phsyio and I need to sort out boots for Joe his feet are far too small size 1.5 for us to get off the peg shoes that he can walk in he also has oddly shaped feet so we get this sorted asap. I am also hoping that boots will stop him rising to stand on the lateral borders of his feet not his soles.
On 10th June we are seeing cardiology for a scan and a medication review, I need paperwork for our holiday information on fluids restrictions and sun sensitivity with his drugs.
We are then at the childrens hospice from 14th to the 17th June.
On 25th June we have the biggy, we see his metabolic team, from this meeting we need a totally revised feeding plan and a revision of night feeds, he is basically getting to many calories from his milk and as he virtually refuses to drink anything else its giving me serious issues.
We need an update prescription that includes lancets and glucose monitor strips.
And the huge issue we need a care plan for use in an emergency at the local hospital which is both comprehensive and signed by a consultant, having had three occaions where he has had a temp of 39.5 and has had no antibiotics given we need something in writing before he becomes septic because no one listened..........
wish me luck......
Tuesday, May 04, 2010
What is?
I had lots of What is? questions on Friday while trying to get respite out of the local authority for Joe.
What is his life expectancy?
10-19 years
What are your strengths and weaknesses as parents?
Weaknessess we are totally exhusted.
What would you like as respite?
Oooooh say a night a fortnight or a month.
What does his normal night look like?
up at 11.30pm up at 3.30/4.00am up at 5.30 and 6.30 plus 2hrly nappy changes.
Do you have any family support?
erm no.
Doesnt look like you will qualify but we will take him to panel and see.............
Lets just say Im not holding my breath.
What is his life expectancy?
10-19 years
What are your strengths and weaknesses as parents?
Weaknessess we are totally exhusted.
What would you like as respite?
Oooooh say a night a fortnight or a month.
What does his normal night look like?
up at 11.30pm up at 3.30/4.00am up at 5.30 and 6.30 plus 2hrly nappy changes.
Do you have any family support?
erm no.
Doesnt look like you will qualify but we will take him to panel and see.............
Lets just say Im not holding my breath.
Sunday, April 18, 2010
Counting Our Blessings
The news that Merrys baby boy Freddie had so sadly passed away at just 11 days old, I think may have made many in blogland think but by the Grace of God go I.
Merry is someone we have as a family alway admired her obvious love of both her family and of home ed and her honesty about how life at times can be downright awful.
We were told when Joe was 10 weeks old his condition was unsurvivable and he was considered for a heart transplant he to our great joy rallied and recovered to become the minchkin toddler that we have today, but on our journey with Barth we have met many famillies whos babys toddlers children and young men have not had such good outcomes.
We live in a society where now luckily infant and child death is rare, but that also means it can be somewhat of a taboo and the term life thraetened flattens convesation at an alarming rate.
Merry nothing can change your grief or bring your beautiful boy back, and I just hope that the tiny seed of love he left you with will grow into happy memorys of a short life and the blessing that he new you were his Mum. Thinking of you and praying for you and max and the girls as you mourn.
Rachel
Merry is someone we have as a family alway admired her obvious love of both her family and of home ed and her honesty about how life at times can be downright awful.
We were told when Joe was 10 weeks old his condition was unsurvivable and he was considered for a heart transplant he to our great joy rallied and recovered to become the minchkin toddler that we have today, but on our journey with Barth we have met many famillies whos babys toddlers children and young men have not had such good outcomes.
We live in a society where now luckily infant and child death is rare, but that also means it can be somewhat of a taboo and the term life thraetened flattens convesation at an alarming rate.
Merry nothing can change your grief or bring your beautiful boy back, and I just hope that the tiny seed of love he left you with will grow into happy memorys of a short life and the blessing that he new you were his Mum. Thinking of you and praying for you and max and the girls as you mourn.
Rachel
Summer Term
What are we aiming to do this term.....
English
Getty and Dubay handwriting
creative writing (making a start on)
Montessori Grammar materials
Completing ORT 6+7
Maths
Education city maths ages 6-7
Montessori Decimal system, fractions, multiplication and division
Science
Food and digestion
Magnetism
a visit to the science museum
forces
History + RE
Churches and Christianity
Geography
Finish rivers and streams and where I live
Look at old english woodland
French
find a suitable programme and make a start.
IT
Education city and photography
Cookery
start using harriets cookery for lunch once a week.
Thats it for now
English
Getty and Dubay handwriting
creative writing (making a start on)
Montessori Grammar materials
Completing ORT 6+7
Maths
Education city maths ages 6-7
Montessori Decimal system, fractions, multiplication and division
Science
Food and digestion
Magnetism
a visit to the science museum
forces
History + RE
Churches and Christianity
Geography
Finish rivers and streams and where I live
Look at old english woodland
French
find a suitable programme and make a start.
IT
Education city and photography
Cookery
start using harriets cookery for lunch once a week.
Thats it for now
Saturday, April 17, 2010
Demelza Is......
Our local childrens hospice
Were we get to.....
get a good nights sleep
dont have to worry about meals or washing or medication or physiotherapy.........
play with Harriet without saying im just going to do medication or do physiotherapy
to talk about how Joe is without people changing the subject "life threatened" always flattens the conversation.
for Harriet to see she isnt the only "special needs sibling in the world"
Bliss
Were we get to.....
get a good nights sleep
dont have to worry about meals or washing or medication or physiotherapy.........
play with Harriet without saying im just going to do medication or do physiotherapy
to talk about how Joe is without people changing the subject "life threatened" always flattens the conversation.
for Harriet to see she isnt the only "special needs sibling in the world"
Bliss
Tuesday, February 16, 2010
Ways and means.....
Well actually I have been brave, iv started (well starts 9th March) a Montssori toddler group. What ever happens and wherever I wander, I always come back to my beloved Montessori. I wonder how this will go............
Rachel
Rachel
Saturday, February 13, 2010
Trying, Trying and Trying again.....
We were seen by the hospice social work team on Tuesday overall it was positive and I was also told I have a right to work and to Home educate, can I bottle that statement.
Im at a loss what to do over work as work is pushed by all we see, its good for parents to be working but is it safe for this sleep reduced parent to care for other peoples kids ( im a childminder).
Im considering a re train but in what I loves eastern medicine and would love to do acupucture but thats going to be long and expensive,
Where from here?
Im at a loss what to do over work as work is pushed by all we see, its good for parents to be working but is it safe for this sleep reduced parent to care for other peoples kids ( im a childminder).
Im considering a re train but in what I loves eastern medicine and would love to do acupucture but thats going to be long and expensive,
Where from here?
Saturday, January 23, 2010
New year New way.....
Well we have now completed our first term of offical home education.
We started with montessori which harriet has worked with since the age of two, but then Harriet started school and now she happier doing more adult led work with montessori added in so we have a montessori/waldorf/NC mix going on.
Harriets now reading to ORT level five at home and four at school unsure about that one.....
He maths is simply good shes adding up to fifty, knows her 2 3 5 10 times tables understands geometric shapes and has just whizzed through stage 1 of LETTS so thats good.
We have been doing a combined geography history science project on the history of life and in the last term have done projects on evacuation and grace darling.
plus what she has done at school ie science geograhy history and Swimming its all going well.
Joe
Joes doing well and the drugs did turn up in the wrong fridge. We have just started having respite at the local hospice for him which is great as we get some sleep.
I am starting montessori with him now lots of sorting putting in tipping out as well as circle time and lots of story reading.
Me well im just plain tired......
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