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

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.

Mothers pride

March 4, 2009

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?