Meeeeeeeeeee's Blog

my boys

November 6, 2011
1 Comment

My boys are doing so amazingly well,Robin may be on Jeremy Kyle this month as an inspirational child and the microcephaly awareness day was amazing such support shown.

My youngest still has problems walking his boots from the orthopedic at the hospital help a little the nightly physio on his feet and ankles are keeping his tendons supple his latest seizure meds which have been upped a little are fingers crossed working a little better so less seizures.The autistiuc part of him is a work in progress he is so bright,his nickname is Sheldon aka shelly bean (if you have seem big bang theory Sheldon character is so like him) the only issue that really seems to concern him at the moment and as a child who keeps on asking as once its on his mind he wont stop asking until he gets a suitable answer,it  is at the moment grandad can I see him? my dad passed away after his battle with cancer and he comprehends in a childlike way he can’t see grandad as he is in heaven.He is aware he has a mom and a dad who both have parents so he has another grandad a paternal one.

conversation goes something like this…

I..Can I see grandad.

Myself..Grandad is in heaven you remember.

I..I know,I mean my dads one.

Myself..hmm I will have to talk to them or your dad about it.

I..ok phone them,they can come to my house.

Myself..ok son I will see what I can do.

This conversation then was continued and brought up regularly and small few day intervals.

I..send my picture to grandad

Myself..err which grandad?

I..the one who isnt dead,whats his name? does he look like daddy or me? does he have a moustache like your dad?

(after lots of questions about him I couldnt answer..)

Myself..ok I will write to daddy and ask him to answer your questions.

I..ok you can phone him at work.

myself..he might be busy.

I..he might not be.

After a couple of months of these questions and him getting frustrated by my lack of being able to answer his questions and his father ignoring his sons plea for his help filling in the gaps (via my phone call and letter explaining his son requires his help support or input on questions he asked) I decided to go to the organ grinder not the monkey.I wrote to the grandparents saying basically the questions their grandson is asking and if they would fill in the blanks and Offered if they wish to see him as never have or contacted to ask the offer still stands.

His dad was phoned by a Third party to say as he was not being a help towards his son I had gone via his parents and wrote to them,he was not happy.But desperate times call for desperate measures.I recieved a letter a few days later stating until the night before they didn’t know we existed as their son knowing the letter was coming dropped the bomb shell.Ugh I felt bad as 1: what if they are really old shock is no good. 2:why would a father be ashamed of a child not wanting to share him with family.

I am still non the wiser on any details for my sons questions as his grandmother said let the shock sink in and will decide what they want at not to build on expectations also had my motives for bringing this to their attention questioned?

ok yes shock I agree but four months on no decision! Yes decided what they want,but shouldn’t it be as a young child what the child needs not a whats going to effect them as what harm is sending a young boy a christmas card or a birthday card or a trip for an hours drive in a car to see sports day nativity play.

questioning my motives..Shouldn’t they question how come their son hid pregnancy and birth and childs life from them,how didn’t they notice any character mood swings I know if my children are lying upset worried etc Why their son felt scared guilty or ashamed to talk to them.yes maybe their christian attitude to having a child out of wedlock was a factor,but surely rejecting a child is a greater sin.

 

 

 

 

 

 

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microcephaly awareness day

August 21, 2009
8 Comments

Last year on the 30th of september the first national microcephaly awareness day was held and people were urged to wear red to show support and raise awareness.
I set this up via my son robins facebook group as microcephaly is a very rare disability and it was a sadly overlooked disability it went really well with people over the uk wearing red for the day a bus company in portsmouth wore red,various schools wore red and the money raised went to bibic a charity which helps children with various brain injuries and disabilities including microcephaly.
Last year I was busy emailing downing street,even our majesty the queen was asked if she would support us by wearing red and giving press interviews,I was quite surprised I have been asked by a charity in USA the children with microcephaly foundation if they can join us this year and make it global.
I obviously said yay as it is doing exactly what I aim to do and make this rare disability known,this year we are wearing yellow as it is the charities colour and as it is the only charity for microcephaly in the world I agreed to change the colour.
As robin started this campaign I was asked if his photo could be used on the press release and flyers again I have agreed Robin is saying wow I’m going to be famous in america not quite as famous as michael jackson.

The press release has been done today and flyers I have just emailed off a photo of young man so it can get into circulation,jenniffer the president of the charity is going to send copies of the press release and flyers.
It goes to show if you think you are too small to be effective you have obviously not been in the dark with a mosquito,from a small person like me wanting help my son lots of children and parents will be helped all because an eleven year old boy wanted people to be aware of his disability.
Robin had ideas and is being helped bring them to light by our american friends,I am so proud of my son he is an inspiration that even though he has learning disabilities and physical disabilities he wont give up.


fun and family

August 17, 2009
3 Comments

robin wanted to go to go ape an assualt course in the trees,they started 30 ft high the got higher as carrie-ann isn’t 18 yet she couldn’t be his responsible adult so I had to..gosh was I scared you can just about see me as carrie-ann took a few mobile snap shots,Isaacs face is a picture as he watches.

iphone2 027iphone2 025iphone2 013wonderland 010


wow finally get online

July 30, 2009
2 Comments

wonderland 059wonderland 053wonderland 051It has been an hectic few weeks,Isaac had mild swine flu then a chest infection which caused his temperature to go high causing seizures.
My father was at mine and had a small heart attack on my settee which scared me out of my wits so both Isaac and my dad were both in the hospital at the same time,my dad was admitted at four pm and I finally got home at two am the next morning and had a quick drink and very little sleep as usual and Isaac was taken by ambulance at nine am the same morning.

I have managed to get a few fun times in with the children a trip to wonderland before Isaac and robin had swine flu and last sunday a trip to bath so the boys could see their favourite rugby team ground,they loved it.
I now have a special needs buggy for Isaac as after seizures his side is weak causing mobility problems and after a seizure he is sleepy and he is getting quite heavy for me to carry and caused me to have a slipped disc and if they cant control seizures as gets older I really am going to struggle if i have to carry him.

a few pics of the kids at bath rugby club,robin got to kick a ball through the posts,it was really good to see as a couple of years ago he couldn’t even kick a ball.


Hectic household

June 30, 2009
5 Comments

Isaac has been quite poorly and after a few bad seizures lost his swallow reflex and couldn’t eat he has to see the speach therapist and emergency feeding specialist if he cant swallow again.
I have finally got a decorated hall stairs and landing after my ceiling has been replaced and asbestos removed in true council style things didn’t go exactly smoothly.

Isaacs routine is as follows

Monday: pre-school
Tuesday: pre-school
wednesday: gross motor skills exercises as he is a bit weak on left after seizures
thursday: coffee morning/play date helps with social skills
Friday: speach therapy

weekend: family time with siblings,grandad and trying fit in all children want to do.

in between this I clean,do laundry iron clothes and meet up with my good mate jojo as I need bit of support sometimes and try and catch up with my lovely blog friends .Obviously if Isaac is having a bad week of seizures then the routine is out of the window.
Friday night is carrie-anns night out at dance with mates or sometimes she babysits for people as a bit of extra pocket money and tuesdays both carrie-ann and robin are out at church youth activities.
Saturday night is my night if I want to go out Isaac is in bed and I occasionaly go to jojos and we have a drink and girly chat which suits the elder ones as they watch tv together and eat goodies and enjoy the bonding time,they will really miss each other when carrie-ann goes to university.

carrie-ann may be offered a bursary paid university course if she gets the grades she needs and as she is st johns ambulance trained first aider and puts in for warden job at university then she could also have free accomodation.So she is praying on this as it would be a great help she is at the university for a few days on a taster type course then back to sixth form college friday doing forensic science which she is really enjoying.

Take care
Fraggle xx


My blog has been hijacked!

June 2, 2009
2 Comments

well I was going to do a post about the weekend of wonderment we had and also have to do a post on the lovely One nice blog award I’d so kindly recieved from midwife muse,but alas It will be put on hold as Robin as more pressing matters in hand.
Robin wants to help raise money for help for charity help for heroes to help raise money for our brave troops after some have got hurt or need therapy to help live a full active life after giving their all for us,as Robin has had therapy being special needs and having a disability so he knows how much better his life has been after getting the help and support.

He is asking his teacher at school if he can do something to raise money for help for heroes,and he is going to use my blog as well,the idea is that for this week on this post of his on my blog that each person who comments on it a pound will be donated to help for heroes.

ps:obviously there will be a cut off point as myself and his sister are helping him honour his promise to pledge the money.


caption competition.

May 18, 2009
9 Comments

london 013i love this photo..small prize for the best idea of what they are saying or thinking!


Thomas land trip.

May 12, 2009
10 Comments

drayton manor 010drayton manor 015drayton manor 012drayton manor 003drayton manor 002As I have a hectic week and may not be able to post as I have hopefuly tommorow my hot air balloon trip.Thursday is a trip to hospital for myself luckily none of the children and sunday I am off to windsor to see the grenadier guards for black sunday with my dad and need to spend saturday ironing and other essential household chores.So a few photos of Our trip to thomas land.


Proud mummy moment

April 29, 2009
5 Comments

mixture-018 Isaac got a sticker for knowing how to describe the weather and also a certificate for knowing and being able to pick out at random numbers 1-10 not bad for a 27 month old child 🙂 mixture-032 he got a big cuddle of a proud elder brother,who has got the lead role in the school production of a modern day version of macbeth.mixture-031


A week that was…

April 20, 2009
12 Comments

It has been a time of cancelations and chocolate.
It started on thursday with my planned day out looking around the shops and lunch with a friend and the boys (carrie-ann was at her nans for a week to have peace and quiet to study for her exams ) my friend had to cancel and we made arrangements for lunch on good friday which again was canceled as an eldery member of the family was hospitalised.
Saturday was our early birthday treat for Robin to drayton manor and thomas land for Isaac,we had a fun day Isaac had a few seizures in the theme park think it was over stimulation of his senses and lights.
Sunday we went to church and after had our usual easter egg hunt,my hot air balloon trip was canceled due to low visability.
I have managed to decorate my lounge through dining room and have done some gardening taken the children swimming (Isaac had a seizure after in the changing rooms) and spent some quality time with the children.
Yesterday after church as it was a lovely day Isaac was playing in the garden with myself and the children and he ran and twisted his ankle,he started limping and it kept giving way and started to swell a little so it was off to A & E which is about nine miles away,I was very impressed by the staff I went to reception and after booking in was in triage within a few minutes the nurse took a few details and I went back into the waiting area I was expecting at least an hour wait or more and straightaway they called us through.
Apparently as he was calm and quiet they saw him straight away as him having autistic traits and epilepsy it would be easier for him and the doctors to examine him then rather than let him get stressed out by the long wait which in turn could cause him to have a seizure.
Luckily he had only sprained it so calpol and hardest part trying to get him to rest it. whenever he gets nervous he laughs,so he spent most of the time at the hospital giggling.Oh and nessa the rabbit bit his finger so he has a tubi grip on his ankle and a plaster on his finger.

How is everyone?


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