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.

 

 

 

 

 

 


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


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?


full of hope

March 17, 2009
10 Comments

After my earlier post today via my phone,things are picking up.
Isaac had lost a little weight but nothing to cause concern and his medicine isn’t fully controlling his epilepsy but seems to be working as well as expected so We don’t have to take the riskier option.
whilst in with the paediatric specialist he informed me he had recieved the disability forms and had to fill in five questions and his secretary would type up a letter and send it off straightaway.The questions were how many seizures does Issac have a day/ night and what type,he put up to five a day and two a night gran mals,full body shakes/jerks.Can they be predicted ? he put no,Is there a warning sign or aura before? again he put no,as not all types do and how can a two year old tell you if he did.Does he need more care supervision than a normal two year old and at risk of getting hurt because of disability? he put yes needs to be kept eye on.
The one he needed information on and was waiting to ask me was when was Isaacs last seizure,which was on the bus this morning .
He has put him down with epilepsy and autistic traits as he is too young to get a diagnosis of autism until he is nearer to four.
The doctor thought the questions on the forms were as silly as I did.
I have to wait for the beaurocrats to make a decision what help if any they decide to give him,should take another couple of weeks.
oh and the regression thing maybe down to trauma of the hospitals and tests and he should make a full recovery or sometimes memory is effected with epilepsy and medication,so to keep on practicing and refreshing his memory should help.
Isaac has had or rather got a busy week,pre-school yesterday and he came out with a sticker saying I knew the day of the week! (which amazed me as I didn’t even know he knew about time concept) he had a trip to the hospital today and is on his trip to the snow dome on friday, and he has a lovely new car to have a ride in that was a bargain £30 off ebay brand new battery operated one which I couldn’t even wire up so had to ask a friend from church to do which he did last night for me,Isaac decided the box made a lovely tractor,then robin decided it made a lovely tardis and Isaac reclaimed it this time as an aeroplane.
I think later on this week I’ll do a post of a week in pictures,I may even put the one of robin dressed as a girl for comic relief at school he raised £50 in sponsorship money only two boys were brave enough to turn up as girls one boy a yr 11 boy went the whole way and wore thongs and stockings.


In mc donalds via I phone.

March 17, 2009
2 Comments

I got the early bus as it takes an hour to get to the hospital and if I wait for the next one I have a hectic rush across lichfield,and as Isaac has to see the nurse and be weighed and measured first I have a five minute slot to get to the hospital.isaac is asleep as he had a seizure on the bus,people were staring.I really wish they wouldn’t do that. At least as a toddler he’s not aware of the concept of being different.


Mothers pride

March 4, 2009
3 Comments

The paediatric assessment went a bit bleugh,Isaac was a little star he is so used to being seen by medical staff it is second nature,he cooperated with every thing the dr did or asked then he asked some questions regarding his fathers side of the family and about siblings a couple I couldn’t answer as hadn’t heard from Isaacs dad and whilst in assessment room used the phone to ring him and ask or so he could speak to the doctor and his mobile was switched off and as he had recentley in last few weeks moved job I hadn’t got landline or new works no,I looked an idiot as you could see on the specialists face the *what sort mum doesn’t get emergency no for childs dad or works no* as it mod not just going to say oh yes here new base and would have taken all allocated time to trace him especially if he was off base.He has been refered to another specialist for therapy so is now under three different paediatricians and still not 100% sure diagnosis yet as at aged two its hard be easier when 4-5 may possibly be epilepsy with autism, and regression could be due to the stress of hospital and effect seizures had on him.
Or lennox gastreaux which is a syndrome with all three of the afore mentioned symptoms.even possibly another syndrome that I cant remember as when on own trying to take things in you miss things or forget what has been said,so towards the end of consultation as Isaac was tippy toeing around the room I said by the way he walks on tip toes a lot,can you check feet or heels as tendons may be tight or any idea how I can get him to walk on feet properly as I don’t want him to have a bad back to add to his list of problems,the doctor said walking on tip toes is a sign of autism so we went back full circle to that he checked his feet and they are fine.

I entered carrie-ann into the litchfield bower queen competition,The newspaper article stated that they wanted photos and a campaign of why you should be the queen,representing your college and list of charity work and community work you do and must be confident.Carrie-ann ticked all qualifying boxes beauty,brains community and charity minded.I sent two snap shots and a list of charity work and community work she does and what 6th form she goes to etc..
When I got back home today she had a letter on the doorstep she had got through to the finals,she is at a photo shoot on saturday at the golf club and can use the facilities all day and the judges can get to see the girls personalities and on sunday she is at a very posh bar in litchfield for a rehearsal and to meet the compere at 4pm then the final at 7.30 pm,the litchfield bower is one of if not the oldest carnival in the country and as its a special anniversary they are looking for a very special girl.
So to get to the finals is an achievement in its self

I know that Isaac is at risk as a severe epileptic and going into status eplilepticus and wouldn’t dream of not letting his dad know of any major medical issues but what am I supposed to do if his mobile is switched off and he hasn’t told me where his new base is?