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.

Mar
29

Wednesday 28th March 2012

The weather has been glorious this week, and Harriet and I have been spending lots of time out in the garden.

Harriet, as you will know, is almost 3 years old and can run around to her hearts content, she has been playing with buckets of water and helping mummy and daddy to clean up all the outdoor toys ready for summer, where as I, have been safely ‘imprisoned’ in my pushchair/highchair/travel cot :( . Its not that mummy doesn’t want me to have fun, its just that when she puts me down on the ground I have a tendency to head straight for the playhouse, and to be honest, (although we have a south facing garden, it is a bit of a quagmire down there, as the playhouse sits predominantly in the shade, and the ground gets a little ‘boggy’.

Its okay, but really….its a little dull watching Harriet race round like a looney while I play ‘throw another toy on the floor and shout at Mummy to pick it up’ :roll:

A few days ago, Mummy’s friend Nicki brought up a v tech baby walker…..now we already have one of these which was Harriet’s…..but it is pink, and Nicki thought we might like the primary coloured one for the garden.  Harriet was cleaning the frame part of it yesterday, she was having loads of fun…scrubbing it with a brush and soapy water, then hosing it off and soaking Mummy in the process. :lol: well I decided that I woukld quite like a piece of the action ;)

I waited until the other children came in from school, Mummy went inside to do the washing up and Eleanor was left ‘watching me’ and picking up my toys. The thing with Eleanor is….I have her wrapped around my little finger, and because Daddy was keeping an eye on us, I cried until she lifted me out of my prison/travel cot.

She put me down and I made a beeline for the frame of the baby walker….pulled myself up and set off in spectacular style towards the back door, grinning like an idiot and making all sorts of shouty noises to get everyone’s attention.

Daddy was the first to see me, and quickly positioned himself behind me, maybe he thought I was going to fall or something, and it wasn’t long before the children were all shouting at Mummy to come outside. By the time Mummy reached the door, so had I and I was stood in front of her with a face like a cheshire cat (that’s a very smiley cat, for those of you who don’t know). To say Mummy was a bit shocked was an understatement…….She just said “oh wow….my baby is growing up!” …well derrrrrrr…thats what tends to happen Mummy :roll:

I also discovered that if I ram the walker into a step/wall/fence/whatever seems to be preventing me from continuing in a straight line, then I can make a little reverse step and turn myself around. :D Much fun was had for the next 40 minutes or so whilst I walked the length of the garden path, bumping and reversing at each end to get myself going back the other way.

Mummy was amazed, and was just staring in wonderment at me, giving me little smiles and shouts of “well done” and “clever boy” etc.

I can’t wait to see what tomorrow brings, I might even be brave enough to tackle the steep path (as long as I can get to it without Mummy noticing ;) )

 

Mar
11

Sunday March 11th 2012

Wow! Today I am one year old! Hasn’t that gone quickly? before you know it I will be leaving home and looking for a job/going to university.

I have come a long way since this time last year. We babies really are incredible aren’t we? ;)

So….I was born on this day last year. I weighed 7lbs12oz and was a tiny scrap of loveliness (if I do say so myself ;) ) I didn’t really do anything. I could open my eyes, flail my arms around a little bit and I was just about suckling (although not very effectively). 

This year….Wow! Its quite a different story :D

I am crawling, pulling myself up to standing, cruising round the furniture, climbing onto the sofa, Talking (not much but talking none the less). I have mastered climbing the stairs (particularly funny when I can get to the top without mummy even noticing :lol: ). I can wave, blow kisses, clap, dance (well jig around a bit when music comes on), play peekaboo, copy the actions for ‘Twinkle twinkle’ etc etc. I have come a looooooonnng way!

So I woke up today to be greeted by Nanna, Mummy and Daddy were working till 4am this morning so we left them sleeping whilst I had my breakfast.

When Mummy and Daddy got up I had some presents to open. I got lots of lovely things. There were some new clothes, lots of toys with balls and music, a birthday cake with light up candles, some cars, including some clever ones that you bang on the top and they whizz across the room (such fun) some books and a lovely rag doll dressed as a sailor.

We went for a really long walk in the sunshine, well technically, I was pushed, Daddy and the other children were on their bicycles and Nanna and Harriet walked. Mummy stayed at home to decorate my birthday cake. 

Clare came to see me in the afternoon with John and Kyle, and so did Nicki :D they brought presents too…..I could get used to this :lol:

After dinner, we had birthday cake which was yummy, and also involved everyone singing to me so I could dance around like a loon in my highchair and applaud myself :D

I stayed awake till about 8.30pm (wayyyyyyyyy past my bedtime :D ) when Mummy tucked me in, and got all soppy telling me how much she loved me, and kissing me lots.

Its a shame that birthdays only come round once a year, I have had a lovely day and been thoroughly spoiled.

 

**many thanks to ditzy doll for Leons beautiful boy ragdoll.

 

Feb
22

Wednesday 22nd February 2012

So, here I am …a little over two weeks away from being 1 whole year old! Doesn’t time fly when you are having fun? :lol: Read the rest of this entry »

Jan
01

Sunday 1st January 2012

Wow! a Whole New Year is upon us……. in one way it doesn’t seem like two minutes since I graced this earth with my presence, but in another it seems like I have been here forever :shock: Read the rest of this entry »

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