Feb
10

Wednesday 10th February 2016

You know that saying … ‘A mother’s instinct is usally right’ ?

Well I really ought to listen to mine a little more.

On Monday I took Leon into school against my own judgement and cried after I left him as I knew something wasn’t right.

When I collected him at 3.15pm, he seemed okay, he was smiling if a little snotty, but felt warm to the touch and didn’t want to walk. I stripped him out of his uniform when we got home to discover that he was soaking wet, he had wet himself at some point and nobody had noticed, least of all me. :(

He continued to wet himself throughout the evening and at 6pm fell asleep in his dinner, which he hadn’t touched.

at 5am yesterday morning, he stumbled downstairs and looked dreadful. His skin was so pale he looked almost blue in colour and his eyes looked like those of a drunkard. I checked his temperature and felt a bit sick when it was 39.8. Now Leons resting temperature is quite low (36.5) so it was really high and I felt a little panic rising within. I immediately gave him some paracetamol and filled his water bottle before settling him on the sofa and getting on with the morning tasks before the doctors opened at 8am.

I managed to get him an appointment for the morning (they are pretty good at our GP, Leon is always given an appointment if needed.) and off we went at 9.30 to see the Doctor.

Leon was in his fleecy onesie and socks, with his blanket wrapped around him and his water bottle in one hand and a tissue in the other. He had his dummy in (which would not normally happen outside of the house and he snuggled into my chest and didn’t move for the entire 40 minutes we were in the waiting room.

The first thing the doctor said when he saw him was “My, you have got a very poorly boy there.” Which didn’t make me feel any better if I’m honest.

He checked him over and discovered that thankfully his chest was clear and there were so signs of infection in his throat. It was a relief as streptococcus can be really nasty and it had crossed my mind that there may be a throat infection starting. He couldn’t rule out a water infection and didn’t want to waste time doing tests so he started him on some antibiotics straight away. I was told to keep him home, let him rest and make sure he had plenty of fluids, all common sense really. Then he just checked a few other things….

He couldn’t see Leon’s ear drums as his ears were ‘foggy’ he asked if I thought Leon had hearing difficulties (which I do) and made a note on Leons file. Then he checked his heart rate and spent a long time listening/timing it. He told me that Leon had a heart murmur. I didn’t know whether to cry or kiss him…. you see I have known that Leon’s heart is not quite right for some time now, but every time I have mentioned it, it has been dismissed. It took a different GP, a pair of new eyes/ears to spot it.

So…when he is better we have to go back to get get the ball rolling with investigations into his heart murmur. Just one more thing for my brave little boy to deal with.

I am in total awe of him.

ps…its costing me a small fortune in pringles to bribe him to take all his meds just now ;)

Feb
08

Monday 8th February 2016

I hate Mondays. I mean really detest them.

On a Monday morning I start five days worth of battles to get Leon to school.

It starts when he refuses to get out of bed. He cries, kicks, wraps himself up in his quilt. We lift him out of bed, he run away and hides in someone else’s. We give him 5 or 10 minutes while we organise the girls. When we do get him downstairs we have the fight to get breakfast into him, to get him to take his medicine, and then to get dressed. We will do this at least twice on a daily basis. He will strip off, run away, hide. It’s exasperating.

The girls by now are dressed, fed, washed, teeth brushed, hair tied up, bags at the ready and coats and shoes waiting for them. Leon however, still looks like he has been dragged through a hedge backwards, his eyes are red and his face blotchy, he has cried so much. His uniform is on in a fashion but pristine is something he will never look on a morning.

By this point the girls have gone to school, and Im still fighting to get Leon to eat something, drink some water, clean his teeth and most importantly take his bloody medicine!

By 10am I have him in the car… we are on our way.

My head is pounding, I’m exhausted and in reality my day has yet to start…thats when he coughs. Not just a little cough. A great big dirty hacking sound that sets my heart on edge. His nose is streaming and I look at him out of the corner of my eye and wonder what the hell I’m doing taking him into school.

When we arrive, I’m met by the sympathetic faces of the two school receptionists. They have known me for years and all of my other children have excellent attendance, so I think they see how difficult things are with Leon. They um and ahhh over whether he should stay when he is clearly not well.

Well, would you look at that! I’m the worst parent in the world. I’m so concerned with attendance issues that I failed to see that he was unwell.

Eventually it’s decided that he should stay and we will see how he goes. If he gets any worse or if he develops a temperature then they will call me.

I leave him with a kiss and an I love you, and he toddles off into school with one of the receptionists. He is happy, and he gave me a little smile on his way…but I walked out of there feeling like my heart might break.

I am raising 8 children, and I think I do a pretty brilliant job of coping with all that life throws at us, but today, just for a little while I felt like I couldn’t do anything right for my little boy. I felt like I was failing him as a parent. That I missed something vital because I was more concerned with school and attendance and what people will think of me. Why do we do this to ourselves? Why is there a constant need to belittle ourselves and our choices? Why don’t we accept that we know our own child better than anyone else. I realise that he would rather stay in bed and laze around at home all day, I also realise that he knows when he is not quite right and yet I choose not to listen to him. :(

Leon will be fine, I know he will. There are plenty of people looking out for him, and his three sisters are all in school today too. They look after him. Beatrice will be mothering him and wiping his nose for him. They play together because Leon finds it difficult to form friendships outside of the home.

Me however, that’s a different matter.

Oh well, onwards and upwards, mustn’t dwell on it. Time to paint that smile on and get on with the day ;)

Feb
05

Friday 5th February 2016

Hi, this is Leon’s Mummy.

Did you manage to catch up with everything that’s been going on?

I wanted to take a moment or two to share something with you.

Guilt!

It’s pretty much a done thing that you will feel some form of guilt during your years as a parent, that much goes without saying. The thing is, I’m not entirely sure that you are supposed to feel quite as much guilt as I do right now. Maybe I’m wrong! I’m sure there are thousands of Mummies out there who feel just as shit as I do on a daily basis, but it doesn’t make it okay. No. We shouldn’t feel like this. We spend every minute of our lives trying to ensure that our children get the best of everything, that they are given the love, help and support that they need and that they grow up to be happy healthy individuals. THIS is not something to feel guilty about. This is something to feel proud of ourselves for. The very fact that we strive so hard to give another human being the best we can, is  something we should feel good about…so why oh why do I feel like a crap mum constantly. :(

The thing is, everything with Leon is a battle. We have a daily fight of over two hours every single morning attempting to get him dressed, fed, meds into him and then off to school. This is met with fighting, screaming, pleading, begging, crying and pretty much every other trick he can pull to tug on my heart strings. It’s exhausting and I’m wracked with guilt every single time.

Then if we do manage to get him into school successfully, there is usually a phonecall between 1,30 and 2,30pm to tell us that Leon has bumped his head. This is a big NONO for us, as his head is precious, after his surgery he has been left with lots of soft spots and bumps don’t go away like a ‘normal’ childs would. This also gives me copious amounts of guilt to deal with… If I had let him stay home, then maybe he wouldn’t have had that absence seizure and fallen.

On the way home, he pleads and cries for me to carry him, as his toes hurt (and lately his knee joints and hips do too). I can’t carry him as I have an old back injury thats flared up recently, and I also have Harriet and Beatrice to deal with. Amelia is great, she will carry bags and hold the girls hands when I do eventually try to carry him to the car, but it isn’t enough to make this journey a pleasant one. I then feel sad and yes you guessed it…guilty…that I am making him walk when he has clearly had a long day and is tired out.

Every bed time, I have to give him his meds again… They make his stools loose and it breaks my heart just a teeny bit more every time he says ‘But it makes my poo runny mummy.’

When he wakes in the night with yet another seizure, and I sit by his bed holding his hand and comforting him.. I should feel proud that I’m taking care of him right? No…I feel guilty…I feel like there must be more I can do to make his life better for him.

When strangers don’t understand him and I have to stop and sign to him, helping him and then explain to them that he is a little behind just now… Of course I’m proud of him that he has come so far since his surgery, but at the same time, there is guilt…guilt that I can’t move things on for him, make life easier.

So there you have it, and I could think of lots more instances where I’m overcome with guilt because my gorgeous little boy doesn’t have it easy but I won’t bore you with it.

I guess what I’m trying to say is, It’s okay to feel a little bit like this, but you are not alone. My mantra has become ‘It will be fine!’ and anyone who knows me understands that I don’t like to complain or moan about our situation. I prefer to just get on with it, looking forward to each amazing day we have with our little man.

As long as he smiles. I’m good!

So, if you are struggling, be reassured that you are in fabulous company ;)

 

Feb
05

5th February 2016

Wow…. here we are again. It’s been a long time hasn’t it?

I will attempt to bring you up to speed with what’s been happening to me, seeing as I’m almost 5 years old now…yep, that’s right… 5. That’s really big you know.

So, you may remember that I had to have the pressures checked in my brain down in Oxford with Mr Wall an his team? Well in the two years (goodness, has it really been that long?) since I have been to Oxford a further 6 times. Yep they are doing a good eye on keeping their eye on me.

In June 2014 we had to cancel an appointment as I had chicken pox, then Beatrice got them too so in the end our visit to Oxford was delayed by ten weeks.

In September 2014 I was taken in for my pressures checking again. I was still showing signs of swelling behind my eyes, my seizures had ramped up big style and I was repeatedly banging my head against anything I could. I was taken to theatre, had the procedure and when I came round I went insane, hitting and kicking, screaming and shouting until eventually I was on the floor under the trolley with the sensor in my hand and just a wire sticking out of my head. Mummy and Daddy were beside themselves and off I went to theatre to have another one put in. This time they let me sleep for ages and bandaged my head so tightly so I couldn’t pull it out.

I was back on the ward and hooked up a few hours later, and I promptly fell asleep. By 9pm the sensor had stopped working, Daddy was ready to slap someone and Mummy was crying ….again! It was decided that I would go back to theatre again in the morning for a third one fitting. However, when Mr Wall and his team arrived at 7am, they said it was unnecessary, the readings they had from the three hours I was napping were enough to tell them that my pressures were very very high and surgery had now become a bit of an urgency. I was booked in for October 20th.

In October I had what they call a bi lateral calvarial expansion. Sounds fab doesnt it? I was in hospital for 9 days, most of it on the ICU and had a slow recovery once I was home… but hey, guess what? I could talk when I woke up, and Mummy says I haven’t shut up since ;)

In January 2015 I was referred to a doctor in sheffield for my epilepsy. Finally I was put on medication for it and could start to get some kind of normality. My dosage has been increased three times up to now and I still have the occasional seizure in the night (Maybe 2/3 a week) but the absences through the day are still very much present. I still wet myself if I have a good one lasting a few seconds or more, (this can be kind of embarrassing) and I still fall over…lots!

In September 2015 I started school. I have to be honest. I don’t like it. I don’t want to go and I make my feelings known every single morning by creating and upsetting myself (and everyone else) for agood two hours. I often arrive late, and my attendance is low, due to headaches, seizures, falls and generally being difficult.

In December 2015 (back at Oxford) The clinical psychologists decided that I am most definately on the autistic spectrum. I need that like a hole in the head…(oh yeah, i have several of those :P ) and a referral has to be done in Leeds. However, I can’t be referred to the early years unit as I will be 5 before I reach the top of the waiting list, and I can’t be referred to CAHMS as their system won’t take me until I’m 5. So once again we are waiting…. Always waiting and seeing. It gets a little dull after all these years.

So here we are, February 2016. Still waiting and seeing. Waiting for a full speech and language assessment, waiting for assessments to get help and support in school, waiting for referral to CAHMS, waiting for paediatrics to see me about my toes (which hurt). Just waiting.

Hope you are all well, and if you managed to get through this post well done ;) Its a bit long winded isn’t it?

 

Feb
08

Saturday 8th February

Hello everyone, just a little update from me.

My Mummy has been stressing so much lately it is unreal. She is like a whirlwind all of the time, constantly on the phone to people, dragging me down to the doctors and flitting around like a headless chicken. She doesn’t seem to achieve much to be honest. In fact, if I can trust you to keep a secret…. her standards are slipping drastically. The house looks like a bombsite most days, she doesn’t seem to be able to keep on top of it all. Mind you, we don’t help much….as she cleans one room we mess up two others, I feel a little bit sorry for her.

I have lots of things in the pipeline… next week I go back to see the lovely Dr London at the LGI. She specialises in ears and stuff. I cant hear very well in my right ear and as you can imagine that makes things a little bit difficult for me. I will have another hearing test and then speak to the Doctor to update her on whats happening with me.

I am also waiting for a referral to paediatric neurology. This referral was put in place by the neurosurgeons at John Radcliffe Hospital, but it has been upgraded to urgent by my GP this week as I am having seizures (thats what ‘they’ call them anyway) and lots of them.

Most of them are just funny little moments where I disappear off into my own little world, and can’t see or hear mummy. I sometimes wet myself and if Im standing up I fall over, which isnt very nice :(

But I have had four of what they call ‘grand Mal seizures’ and these are a bit scary. They last a lot longer than the little ‘flying away’ ones and I am so so so tired afterwards. They can hurt too and they always make me cry and want lots of cuddles.

So the neurologists (that’s a big word isn’t it?) will have a look into my brain and see if they can find out what is going on in there.

I am going back to Oxford on the 8th April. It will be a busy day (maybe two) as I am to see the whole team to update them; Have my head checked; Have my eyes checked again (Yuck!); have a full psychological assessment and have my bloods taken for the genetics people.

We now know that surgery will not be soon, unless my inter cranial pressure suddenly increases. This is because my lambdoid sutures are still fusing and could cause further issues later on.

So we are pretty much at a ‘lets keep a close eye on him and wait and see’ stage.  Its a little bit frustrating. I know my Mummy is worried that I will have to have the surgery when I’m older and will be more aware, my Daddy tells her that I will probably think its quite cool and that my friends (and the girls) will all think I’m pretty amazing :D

Anyway, that’s where I am right now. The plan for today is to sit down and watch films and have a lazy day :D I might have a little bit of a snooze, its very tiring being awake in the night after a seizure ;)

 

Jan
08

Wednesday 8th January 2014

A letter from Mummy.

Dear Darling little lamb,

1554541_10151929019143121_873178886_nYou are asleep just now. You look so peaceful and calm, its hard to believe what you are going through right now.

We know how horrid it is for you to have all these tests done, and we know how distressing it is when you don’t really understand why. But believe me when I tell you, that your Daddy and I would not put you through any of this unless it was absolutely necessary.

Every time I take you away from home, and your brothers and sisters, I feel sad.

Every time you have to have a procedure of any kind, my heart breaks a little bit more.

Every time you have to go to sleep, I’m scared that I am entrusting you to someone else because I can’t help you.

Any every time I think of your future with this condition I feel scared.

I wish I could take your place.

I wish you could just have a normal healthy childhood.

I wish I could do more for you.

I wish that I knew how to cope with all this.

I feel useless and angry that this is happening to you.

I will do everything I can to make this easier for you.

I will teach you to sign because you can’t speak.

I will crouch down and speak clearly because you have difficulty hearing.

I will stroke your head when you wake in the night.

I will cuddle you and keep you calm when your head hurts.

I will hold your hand and soothe you every time you need me to.

I will love you unconditionally, forever, no matter what!

I will make sure that you get the best treatment and support from the best team for as long as you need it!

My beautiful little boy, your strength and courage amazes me. I only hope that I can be as strong as you are one day.

love,

Mummy

xxx

 

 

Jan
08

Tuesday 7th January 2014

I eventually went to sleep at around 11pm last night, I know it was late because the ward was so dark and everyone else in there was snoring.

When I woke this morning, expecting to see Mummy, I was a little bit surprised to see about 15 people stood around my bed looking at me!

It was the team of doctors who had come to check my pressures.

Mummy was there too and as soon as she saw that I was awake she sat with me and held my hand.

The neurosurgeons (they are the brain doctors) said they weren’t concerned about the pressure in my brain at this time.

My consultant, Mr Wall, who has a funny little beard and strokes it all the time had a feel of my head and then said he wanted my eyes checking again.

Mummy looked a bit petrified to be honest, and I knew from her face that something unpleasant was coming.

The doctors said the wire could come out of my head and all being well, I could go home later on :D :D

When Daddy arrived,  He, mummy and I went to a little room with Abbie, and she used a sharp thing on my head to cut some stitches, then she gave a quick tug and the wire was in her hand. Although it was a bit strange, and it made me cry, it didn’t really hurt and anyway Nemo was swimming around on the wall and the ceiling so I was busy watching him.

I could finally run around :D

I went on the balcony and rode in a car, I went in the playroom and sploshed some paint around. I wowed the psychologist with my clever ‘putting jigsaws together’ skills ;) I ran up and down the corridor with Abbie and had lots of fun.

I like Abbie. She is FUN!

Mummy went out to ring Nanna and Daddy and I went for a walk to another part of the hospital. We were playing with some toys when my name was called and we went into a little room. “NO” I signed. I don’t like it here. That lady is nasty!

I have been here before, I didn’t like it then and I’m going to make sure that Daddy knows I don’t like it now either! But its too late, Daddy has hold of me and those nasty drops are in my eyes.

Before I know it, everything is fuzzy and blurry, the light is hurting my eyes and we are back in the room with the toys.

Daddy is a bit stressed I think. He doesn’t like it when I have tantrums.

Mummy came back and Daddy went off for a break.

Mummy and I had to go back in the room with the horrid lady and Mummy had to fight with me to let the lady look in my eyes.

I HATE this!

When it was all done Mummy and I rode on the magic stairs……. THREE times :D I LOVE them! Then we went to the shop to get a magazine, before going to find Daddy.

We said goodbye to Abbie. I gave her my fudge! Fudges are my favourite, and this one was all warm and Squishy from my hand :D

Then we headed for the car and home.

When we got home, Nanna was really pleased to see me :D and I had cuddles with some of my brothers and sisters.

At about 10 o clock, Mummy tried to put me in my cot, I don’t think so Mummy ;)

Eventually she laid me in her and Daddys bed and snuggled next to me.

 

Jan
08

Monday 6th January 2014

Happy New Year!

That’s what we say isn’t it? I have heard Mummy and Daddy saying it to people anyway.

I hope you have all had a happy start to 2014 anyway :D

Mine has been a little bit confusing.

On Sunday, Daddy went to work as normal, Mummy got all the uniforms ready and polished shoes etc, Nanna arrived for a visit and we had a huge roast chicken dinner. Sounds like a normal (last day of the holidays’ day doesn’t it? Except that after dinner I was bundled into the car with two suitcases and Mummy and Daddy and off we went.

It was a long drive, and seemed a little bit familiar. I pointed out of the window and hummed a lot (thats what I do….Hum….I don’t speak you see) whenever I saw something I thought I recognised.

At just before midnight, and I was very sleepy by this point, we arrived in Oxford. We were going to the John Radcliffe hospital to have more tests done, and I have to be honest, I kicked up a bit of a stink when I realised where we were.

Mummy went off to get the keys for our room in the Ronald Macdonald House. (We would all sleep there that night, then daddy would stay there while Mummy and I were on the ward). When we got into the room, Mummy gave me some milk, got me into my Pjs and tried to settle me down! 1555417_10151928807163121_1408016078_n

NO! I was having none of it! For two hours I cried, created and generally caused a nuisance of myself before eventually having to give in and go to sleep.

On Monday morning Mummy woke me very early by waving a juice cup under my nose. She was actually being very nice, but I was tired, and I didn’t want juice so I knocked it out of her hand, and threw it everywhere. I will give my mummy her dues, she is very calm in these situations! She didn’t shout or tell me off, just lifted up the juice cup and told me to have a drink. I went back to sleep.

When I did rouse myself, I looked for my juice, only to be told I couldn’t have any. I will nil by mouth after 6am apparently. I don’t really know what that means but I was not impressed.

We went down to the ward at 7.30am. We were going to the TDA (theatre direct admissions) so I got to play with some train tracks while Mummy and Daddy talked to lots of doctors.  I was playing nicely when the nurses started rushing around telling Mummy I had been ‘bumped’ to first on the list and needed magic cream on my hands. I remember this from last time, It looks like you have boxing gloves on.

Mummy and I then went for a walk with the nice nurse and Daddy waited for us in the room.

We went into  a room where there were a few people. The nice nurse was blowing bubbles at me and Mummy was cuddling me.  The doctor was holding my hand and looking at my boxing gloves when suddenly “OWWWWWWWW” I let out an awful yell and tried to go rigid in Mummy’s arms. I was trying to sign ‘Hurt’ to Mummy but couldn’t get my hand out to do anything. Then they hurt the other hand and by this point I was beside myself. I heard Mummy say “the magic cream isn’t working, it’s hurting him.” I think she was crying, but I couldn’t really see, all I could see was those poxy bubbles and a big mask thing coming over my face then ……………………………………….nothing.

When I woke up I was in a different room, and my Mummy wasn’t there :(

I screamed and cried and thrashed about, My head hurt and there were lots of people fussing, then I heard her “Its okay sweety, Mummys here” I have never been so pleased to hear that voice. I slowed my crying down till it was little jerky sob and let my Mummy put her arms around me.

We were wheeled back to the ward and daddy (which would have been fun any other day) and I eventually got to sit with Daddy and have proper cuddles while Mummy fussed around me.

I was sick. Lots. then again…….and again……….. It hurt and made me cry. In between being sick I slept. Lots.

When lunch arrived I felt a bit better and tried to eat, then I was sick again :( It was horrid.

My nurse Abbie was lovely, she kept talking to me and trying to be nice but I was just so sleepy. 36584_10151928806763121_1250485273_n

Then I realised!

My head felt funny.

There was a wire.

I tried to pull it out every time Mummy and Daddy looked away but it just hurt, and made my head bleed. :(

I wasn’t allowed to get out of bed, unless I needed a wee. So I quickly learned that as long as I did the teeniest of wees in the toilet, Mummy would keep unplugging me and taking me for a little walk.

I kept this up for the rest of the day and most of the night ;)

I created every time Abbie or one of the other nurses tried to take my temperature/blood pressure/ heart rate etc, and when this happened, the machine I was attached to went completely crazy, showing lots of scribbly lines on the computer.

It was a long day.

 

 

Jan
08

An update 2013 (October onwards)

You are probably wondering why my blog has suddenly popped up in your news feed?

Read the rest of this entry »

Feb
05

Devastating news.

This is Leon’s mummy.

 

It has been quite some time since we updated this blog, and you are probably wondering why now? After all this time?

Well, it isn’t often that I hear of something that really moves me to tears. In fact I have been randomly bursting into tears for the past few days.

In September 2011 Leon and I were nominated for a MADS blog award in the baby category.

One of the bloggers I was up against was Edspire.

I wanted to despise her, I wanted her to be awful, and for it to be okay to not want her to win.

Then I met her at the awards ceremony.

She was one of the loveliest people I have had the pleasure of meeting. Warm, friendly and welcoming.

I thought she would win, She thought I would win, and in the end neither of us did.

But do you know, I was a winner that night, as I met Jennie and lots of other lovely bloggers who have become very much a part of my life as I read about them and ‘catch up’ with them through their blogs.

Jennie told me that she was expecting a baby that night, she was happy and excited about introducing another little bundle to her adorable twins.

That much wanted baby was Matilda-Mae.

Matilda-Mae was tragically taken from her mummy exactly 9 months after she entered this world.

Such devastation is not something any parent should have to go through, but because Jennie ‘touched’ my heart so when I met her, it seems all the more tragic.

Jennie has written some heart wrenching (but beautiful) words on her blog, which you can find here

I had to share and at the same time offer my love and support to Jennie and her family during this terribly difficult and confusing time.

Rest in peace little one.

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