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.








Hectic household

June 30, 2009

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

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.

In mc donalds via I phone.

March 17, 2009

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.

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.

my mind wonders and sometimes I loose it completely!

January 30, 2009

Today It has been all too much for me,the dr hadn’t sorted out the necessary paperwork properly or passed the information on to the health visitor,she thought oh a nice easy two year check up,she weighed him he has put his weight back on he had lost due to the medication a side effect is putting weight on,his height is average for a two year old.
She didn’t do any more tests as he has been refered to the child development centre as since he started having his seizures he has lost some previous skills that he had and is showing some autistic traits,which is all pointing towards lennox gastraux syndrome.The health visitor was oblivious to this as none of the drs in the surgery had informed her.various questions were asked does he sleep well,errm all depends if he has a seizure or two in the day then he sleeps nearly all day not so good at night if he has a night seizure or two then he has a broken nights sleep but has a lay in later.Oh I bet you don’t get much sleep *me* no as if he has a seizure I lay awake watching him and checking his breathing if he doesn’t have one I am listening out for him incase he does so don’t get a proper sleep,she said you need some support,so she has put him in a referal so he is in the system.Whilst this was being not sorted but I had to explain again medical history my phone went for the tenth time off Isaacs daddy as I’d not replied what was wrong and why I was upset via texts.I had told him I was too upset to talk to him at the moment which I think made him more determined to speak to me.
After a really horrible couple of days I really was emotional and trying my best to hold things together and thought talking to isaacs daddy wouldn’t do me any good as I’d take things the wrong way and he’d upset me.How wrong I was! he left me a voice mail after about the fifteenth time of phoning me and said I’ve tried contacting you all day as you know this will be my last today as can’t call again so I’ll phone tommorow.
I sat down with the children in the lounge and was chilling as best I could then my phone rang I didn’t recognise the number so I answered in case it was important,it was Isaacs daddy off his works mobile,he was quite frustrated as I’d not answered his phone calls and was worried about me and Isaac we had a chat about Isaacs medication and he agreed that if needed that the riskier option was what we should do for Isaac It was nice to get some input about isaac and a bit of support,he then asked me if I’d got Isaacs bed alarm I said no and he said he would buy one online and have it sent to my house so I could get a bit of sleep and I said because of his seizures in the supermarket and due to the fact that Isaac has lost a few skills since starting seizures He has a place once a week at pre school and his daddy said to help Isaac get his skills back he will pay for an extra session each week and he will try and phone me more to see how I am and how Isaac is doing.
I had a mild asthma attack today too much stress hopefuly things will get better.

The good the bad and the uncontrolable

January 20, 2009

I’m not going to say much about yesterday as it was as stressful as I’d imagined and I also now have to take the riskier option regarding Isaac..
The lovely Joanne sat with me as I clock watched having random conversations like I text you last week and asked you out and you never replied,to which I had text I couldn’t and ask paula,she was adamant i’d not replied and this conversation was yes I did no you didn’t for a few minutes.I think she was trying to take my mind off worrying about how Isaac was by having silly random conversations about anything that popped into her head.
Robin came home from school stressed as they had changed the timetables and classes and he was put in the special needs class as they had mixed abilities to start with.He was upset saying they think I’m stupid but I get all the answers right the teacher asks I just can’t read or write very well,so I had to console him that they probably moved him so it would be less stress for him,he said well their the stupid ones then I’m more stressed now.
Carrie-ann has exams today and has had a letter to go to bangor university for a residential she is doing babysitting to save towards university,she is a tag rugby coach for youngsters so that has given her more ucas points.

My phone is on silent as little man is asleep he had a small seizure in the supermarket,(I think its the lights in there) he is usually tired and achey after a seizure,and I’m having a drink and a gingernut biscuit then I’m going to reply to the texts I had asking how Isaac was yesterday.

Desicions desicions.

January 13, 2009

Isaac had three seizures last night so little or no sleep for me,his medication has been upped again today,so we are currently discussing adding a third type of drugs.
I’ve had to make a couple of desicions regarding his health and welfare this week and am having to balance out short term solutions with longterm effects and some that will cause him distress for a short while but may in the long term be an advantage.
It’s not easy knowing what to do for the best and proffessionals have one view of the situation and can advise but ultimatley ,The desicion rests on the parents shoulders.
I’ve made one desicion and am praying it is the best one for Isaac,I’ll spend monday pacing the floor and crying lots of crying,and stressing “sigh”

The second desicion I’m still trying to get my head round and it’s just circling around my head.

As I’m trying to keep my blog positive and I’ll end on a positive note Robin has got a letter off the headmistress saying he was nominated by teaching staff as being the smartest in his school uniform,and a good role model to how smart a uniform can look,he has also got his diamond award for having 90 merits for hard work.