Wednesday 31st March 2010

Wednesday 31st March,

Yesterday was a nice lazy day !!!! Courtney was off with Auntie Zara and Zoe most of the day then she spent the night with Auntie Zara and Marc was at respite.Which i was glad in a weird kinda way i really needed the rest.

He has a sore hip the now so god knows what he has done to it i am wondering if he hurt it during his fit on Friday when he was ill. Anna called when he was at respite to say it was really sore and that she was giving him some calpol. Which soon settled it along with a nice hot bath.

Marc's respite carers Anna and Jim are just amazing people he stays with them overnight ever fortnight then he goes every 8th weekend which is just great gives us all a break. Anna and and Jim have 2 kids who Marc adores.

So what did i do when Marc was at respite last night and Courtney with Zara...... Well i went to the football was the highland derby so i grabbed the chance it was cold and snowy but well worth it as Caley beat County 3-0 !!!!!!!!!!!!!!!!!

Then Rob my amazing husband and Donald a very dear amazing brill friend went to the Rahja for a really nice curry !!!!

We then came home i fell into bed and had a great nights sleep !!!

Top photo .... A younger Marc and Courtney.

Bottom photo ... Marc as nursery enjoying a drink.

Sunday 28th March

We are back to normal now nearly after our wee visit to the hospital ... He must be feeling better he helped me tidy his room and oh he was annoying Courtney !!!

So we have had a lazy day watching tv !! So it will be bath and bed soon ...Ohhh after Dancing on ice final which Marc and i love watching !!!! The photo on the left is in A&E the other is on the kids ward ..He is such a brave we soldier !!!

Back in Raigmore

Friday 26th March

I had been up with Marc feeling sick and a sore throat his temperature was high so we went down stairs put him on the sofa and gave him calpol we never got back to sleep.

Once Courtney was off to school i thought right do a few wee bits of house work then grab a coffee as Marc was dosing on the sofa.

Yeah right i made the coffee never got it !!! I was coming into the living room with my coffee and thought oh shit put the coffee down right where i was Marc was having a big fit on the sofa... I spoke to him he didn't have a clue i was there so i thought give it a few mins ad see if he comes out on his own.

But after five mins i thought nope we need help on this one so i called an ambulance he was just coming out of it when they turned up and was really sleepy and felt really sick and he was still giving the odd jerk every so often so of to Raigmore we went.

On the way there i thought shite Courtney's class room looks on to our street i hope she didn't see it as she would panic so i quickly called the school so they could tell her he was ok but needed to go to hospital the usual stuff but she still worries about him.

For some reason we were taken to A&E but were soon on the kids ward Marc was so confused in A&E he got a bit scared as he is use to going straight to kids ward. On the kids the doctor didn't know he was now and very nice asked Val who was on about him and she said he is ill as if he was better he would be following us around wanting to help or telling kids who were crying to be brave !!! He is well loved on that ward.....

Well the doctor or Doctor David as Marc now calls him said it was a viral infection that caused the big fit and we might have to stop over night just to make sure he is ok and his temp didn't go up and cause another fit.

But by 7pm he was sitting up playing a ps2 still not eating but was drinking ... So i said to them look i really want to take him home what they nurses are doing here i can do at home i do it anyway please can we go ..

So Doctor David spoke to his boss and YESSSSSSSSSSSS we were allowed she said yeah i know them he will be safe they on open access any ways !!!! Cant mind her name but she is a brill down to earth consultant.

We were told any more fits or temp gets really high just come back. So my sister Karen picked us up and off home we went. Yeah it was a great feeling walking out those doors again !!!!!

Lets hope we don't see the place for a long time...They are going to see if we can get emergency treatment to try at home first so we don't have to go to hospital.

So how long will we not see the place for ???

Top photo .... The kids now.

Bottom photo ... the kids when Marc was 5 days old and Courtney 15 months old .

Marc

Marc was born on the 28th October at 10.00am weighing in at 7lb 2oz....He had the most beautiful big brown eyes and still does.... When Marc was 6 weeks old he started being really sick and could not keep a feed down.

I called the doctor who admitted him to hospital as he was dehydrated his soft spot had sunk right in and he was very sleepy. When we got there he was placed on a drip and picked up over the next day or a week later we got to take him home

But a few weeks later the same thing happened back to hospital we went... This went on for a few months but the doctors could find nothing Marc's doctor who still sees him today was stumped and really couldn't think what was wrong but we knew something was.

Time passed and before we knew it my wee man was 1.. He wasn't walking had not long learnt to sit on his own was trying so hard to copy his big sister Courtney....

Then one day his temperature was high and he had a seizure back in hospital he had 2 more which were linked to his temperature being high.

One day at clinic i sat Marc down on the floor and was chatting with a paediatrician and Marc pulled his arms up and started laughing i thought nothing of it until she told me it was a type of seizure called jelastic seizure's and more tests confirmed epilepsy.

She refereed us to see a geneticist who within 20 mins confirmed Neurofibromatosis.

I hear you say and the hell is that ... Well its genetic condition due to mutilation of chromosome 17...... Now NF for short can affect people in many different ways it varies from person to person some are mildly affected others they like Marc have hurdles to jump in everyday life.

Here is a link to the NF website http://www.nfauk.org/nf/21

A few years have now passed and Marc is now 10 years old and copes with his condition amazingly he is a brave bright little boy.

Marc has spent many nights in hospital with myself at his side mainly because he has a poor immune system and picks up bugs viral infections easily and his body temperature rises fast and goes very high and sometimes causes him to have a big grand mall seizure.

Marc attends main stream school and has a learning support assistant who is just brilliant with him. The school he attends pulls out all the stops to support him as Marc has poor lower field vision (he will not see things right in front of him ) so the school bought him a special sloping board so he can do his work like the rest of his class mates.

People with NF sometimes have slower mobility than their peers Marc is mildly affected by this but you only tend to see it when he is with his class mates or playing sporty things with other kids his age.

This is a brief in site into Marc and his condition i am going to be doing a blog about the daily challenges NF throws at us i hope you enjoy reading our blog.

The top photo is of myself and Marc minutes after he was born .... The other is Marc about to go of out a walk ....