Meeeeeeeeeee's Blog

The waiting is over.

April 8, 2009

I decided to ring the DWP today as it was eight weeks since I had filled in and sent off Isaacs forms for disability allowance and the letter stated if I hadn’t heard in eight weeks to ring them.
The lady on the phone was a delightful lady and asked the usual questions Isaacs application number and date of birth and she said ok do you want me to let you know desicion over the phone,to which I said go ahead expecting the worst,she said can I check the details of the bank account the money will go in to.At this point I was not sure wether that was a security question or a hint that Isaac was going to get the neccessary paperwork to take to the dss for the extra help he needs.
I frantically searched for my details and read them over the phone and she said ok,well your son has been awarded higher rate dla,in shock I said he has??? she said yes ( there are three rates according to severity of disability and care needed and obviously hospital reports state that he is in need of 24-7 care) whilst trying to get my head around the fact I was actually getting the paperwork I needed to help get free travel to and from hospital and to prove that I’m a full time carer so wouldn’t have to explain situation and private life continually to dss,which is a blessing,the lady on the phone said we have back dated your allowance from the fourth of february the day you rang for the claim forms and it has been put in your account yesterday and it usually takes a week to clear,at this point I could of hugged her I didn’t actually hear how much was put in as I was shocked that I didn’t have to appeal.
Once the easter holidays are over and I recieve confirmation of Isaacs dla award I will ring the dss and notify them of my circumstances changing and that I shall be a full time carer and they will be able to change my status on books and will swop over so I get carers money topped up with income support as being a single parent I cant keep carers allowance as well as income support its either or and I really needed
the disability award so I could get the carers component to get the extra help towards nursery places and to get him into the system ready for school and help with travel costs to therapy and hospitals.
That is a weight lifted.


Breakfast and bunnies

April 3, 2009

memories-0011memories-012memories-010Isaac won the easter bonnet parade,so my making crepe paper daffodils wasn’t in vain.
Our newest member of the family nessa is settling in nicely.
my lovely daughter made me a lovely breakfast,pancakes in the shape of hearts and stars and flowers.memories-002

poorly pc

March 31, 2009

I have got my pc back yay.
It has been into a shop to sort It had a virus and had to remove programmes,I probably could have sorted it myself but as I’ve had Isaac poorly for the last three days with regular seizures occuring it was easier to have it checked and sorted by someone who could focus their mind on the job in hand.
I have managed to do half my back garden just preparation work and today I made Isaacs easter bonnet and brought him a rabbit from the pet shop,I find when Isaac is calm he has less seizures and stroking animals is relaxing and theraputic,so we went this morning to choose a rabbit,Isaac chose a lions head one a little girl we are picking her up maybe thursday or friday as I couldn’t carry her home and push Isaac in the pushchair at the same time.
I have no idea what to name the rabbit as Isaac wanted to call it harry!
the children break up school friday for two weeks,so there will be lots of fun a trip to drayton manor and thomas land,a farm trip Robins birthday and the annual easter egg hunt in my garden.
Isaac has his easter bonnet parade followed by an easter party at mother and toddlers tommorow,his hat has daffodils made out of crepe paper and nest on top with egg shells and chicks.
It is far easier making girls hats as you can make really flowery and put on bows and lace and really go over the top,he looks cute in it anyway!

A week in pictures

March 20, 2009

mobile-pics-013mixed-012isaacs-week-007isaacs-week-010isaacs-week-003isaacs-week-012mobile-pics-010random-010 as promised a few quick snaps of the boys busy week,why when Isaac has a comfy bed did he decide to take his toys out of the toybox at the front of his bed and want to sleep in there?? Robin made a lovely girl on comic relief day..
I was so proud of Isaacs sticker from pre-school,he had a lovely time at the snowdome today I had a wet bottom from sitting on a rubber ring to slide down the hill it was strange being in winter clothes and playing in the snow then walking outside into a quite sunny day and the signs of spring around.

full of hope

March 17, 2009

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.

Justin fletcher

March 2, 2009

I seriously am either being exposed to way too much ceebeebies or have been single far too long as I found Justin fletcher quite attractive in a non kids presenter way,that is so wrong.
Isaac got a sticker at pre school today for achievement and has a trip all expenses paid for to the snow dome with free lunch for parent and child and a book bag of goodies.
we are off to see the paediatric specialists wednesday and i’ve asked Isaacs Daddy to find out any medical history anything no matter how small may help with diagnosis,then we are hospital free for two weeks,so can get on with some normality and have some fun,weather permitting I’m off to pets corner tommorow to feed the ducks and geese and rabbits.
I’ve a chicken tikka cooking away and little ones are bathed and in there pjamas think they are tired

Me myself and I

February 28, 2009

I am child less, for the first time in forever, so me and joanne watched the six nations rugby and we drank wine whilst england lost,i’m chilling out as joanne gone home,I think an early night after watching casualty on tv. It is weird being child less, I think I will get some sleep and pretend brian o driscoll doesn’t play rugby for Ireland ugh.

Coping through the chaos!

February 22, 2009

So I’ve filled in the forms for Isaacs disability and it wasn’t an easy task as I had to put into words how his epilepsy effects him and how he feels prior to a turn and during and after.
Putting into words how a disability or illness effects someone is hard for an adult to do but for an infant who has recentley turned two is practicaly impossible,as the limited vocabulary of a child so small is not exactly going to give the people who make decisions much insight.
some of the questions were so hard to answer ie,how much help does he need a day? how many times ?how many minutes? what would he do if he didn’t have the disabilities he has? how many yards can he walk without discomfort or problems and how long does it take him?
All the questions apart from medication and ones for the doctor were really awkward as some days are good some days are bad,if he has had a bad day or night and had a few seizures in a row then his left side is weak and he aches causing discomfort when he walks or I carry him.
It’s hard to predict when he will have a seizure as the atonic type are rarer and don’t respond to medication as well as the other type myclonic and complex partial seizures he has ,I think he may be aware of an aura prior to the complex partial ones as he has started to stop what hes doing and lay on the floor prior to a seizure.
Some questions were also hard as he is waiting to see another specialist on march the 4th about the regression he is suffering since his seizures and what therapy he needs.
I’ve filled it in as best as I can and added a note to make them aware of any other details and information that was not on the form.
Also since filling in the forms and sending them off they have doubled his medication,so the information is slightly out of date.
It’s not very nice filling in forms focusing on what your child can do or i’llness was really upsetting.

look what I found In my laundry basket this morning!

February 20, 2009

Perhaps he thinks he is going hot air ballooning minus the balloon,all the toys hes got and my laundry basket is the most fun!

I cant believe I’m doing this! Especially for Robin.

February 13, 2009

meeeeeeeee-010meeeeeeeee-007meeeeeeeee-014meeeeeeeee-006meeeeeeeee-0091some photos carrie-ann took this morning of me a reminder I’m getting old 37 tommorow but to my children I’m just mom and they love me unconditionaly.

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