Elizabeth was diagnosed with cerebral palsy as a result of her premature birth. As March is CP awareness month I thought I’d give you all the lowdown.

 

What is Cerebral Palsy??

Cerebral palsy is a condition that affects muscle control and movement. It’s usually caused by an injury to the brain before, during or after birth. Children with a diagnosis of cerebral palsy may have difficulties in controlling muscles and movements as they grow and develop.
Taken from Scope at  https://www.scope.org.uk/support/families/diagnosis/cerebral-palsy#gp6kSk5k92OghZcq.99

 

What are the Symptoms?

No two people will be affected by their cerebral palsy in the same way, and it’s important to ensure treatments and therapies are tailored to your child’s individual needs.

We noticed Elizabeths individual needs to be low core strength, inability to reach developmental milestones (walking, sitting unaided and standing unaided)

What causes cerebral palsy?

There may be no obvious single reason why a child has cerebral palsy. The main causes of cerebral palsy include:

• Infection in the early part of pregnancy
• Lack of oxygen to the brain
• Abnormal brain development
• A genetic link (though this is quite rare)

You may also want to read information on clinical negligence.
Read more at https://www.scope.org.uk/support/families/diagnosis/cerebral-palsy#gp6kSk5k92OghZcq.99

Here’s a few snap shots of the past 3 years, Elizabeth will be turning 3 at the end of March and time has sped by.

Edward loves experiments, he is so inquisitive! So today we created a simple experiment with a tub full of jelly beans, a bowl, a pencil and some paper,

Counting Jelly Beans by Edward.

First we got a tub of jelly beans, we wanted to count how many jelly beans the tub could hold. We counted out 5 jelly beans and put them in a bowl. We estimated how much room they took up. Estimated is big word for guessed.

I estimated that there were 20 beans, Daddy estimated that there were 40 beans and Mummy estimated that there were 50 beans.

We counted out the beans in sets of 5. Each time we counted 5 we made a tally on a piece of paper to record how many sets of 5 we had. We did this until we had counted all the beans.We had ten sets of 5 in the bowl.

10 x 5 = 50. So we had 50 beans! Mummy was correct!

    

I’ve ignored posting for a while, roughly 8 weeks or so. After my stay in the Leicester Royal Infirmary at the beginning of March I was a good girl, the midwife sent me home with some blood pressure medication and a home blood pressure monitor so I could take my BP daily. If it went over 140/80 I needed to call the maternity assessment unit for advice. I did, twice.

The first time I was instructed to rest for an hour and recheck my BP – if it was still high then I should call back. It went down during that hour but a few days later it was 156/82. So I called, expecting to be told to rest again.

The Midwife asked a few questions, and decided I should go in for monitoring as Tiddler wasn’t moving anywhere near as much as usual.

So in I went, I was placed on a BP monitor for an hour, then on a CTG machine to monitor Tiddlers heart rate and movements. My BP just kept on climbing. Tiddler was moving but very gently and the midwife struggled to get a good enough trace on the CTG.

so the whole process was repeated, but then a doctor took me into a private room. “When did you last eat?” She asked as she checked my reflexes, I was ravenous and remembered that I’d not eaten since lunch. It was 7pm. I asked if I could have a sandwich as it looked highly likely I was getting admitted again but why was the doctor admitting me?

Then came the words every fat bird dreads.

“No sorry, I need you nil by mouth”

Shit. I knew what that meant but I needed to hear the doctor say it.

Why?

She looked at me sympathetically and the midwife walked in with my ID tag. I asked again. Why, tell me what’s happening…I was ignored as they discussed my care

“She hasn’t had steroids” “Hmmm 30 +6”

I started to cry. The Midwife took pity on me and said they were admitting me and that I needed to take the tablets she had to bring my BP down. I asked why I needed the steroids, and if my BP went down could I go home.

She smiled. No I couldn’t go home. My protein count was +3 enough for admission alone, add that to the high BP (207/99 at it’s worst) and the reduced movements from Tiddler meant a possible emergency c section, I’d need the steroids to prepare baby’s lungs.

I cried some more. Called Brett to let him know and my BP went down enough that they were satisfied delivery could wait. I was then admitted to ward 5 for the second time that month, I was given the same bed by the Window opposite a lady who had been in earlier in the month. We joked about us never getting out and I settled in.

Even though I had escaped an emergency delivery that night, I hadn’t escaped the steroid injections.  I had the first that evening (Tuesday 24th March) and complete with a sore bum tried to get some rest. One of the midwife’s offered me some tea and toast which was received with gusto. I updated Brett, ate and drifted off to sleep.

Next morning I had the second of the steroid injections and settled back into the old routine of life on ward 5. It was boring, but I coped. I had visits from Edward, friends and other family to keep me going – each day was a day longer for Tiddler to grow. Each day brought the same problem, poor trace on the CTG, repeat CTG and still get poor trace. By Friday, a really friendly midwife took the task in hand and sat holding the transducer on my bump in the hope of getting a better trace. She got what she needed but she was concerned that there were too many decelerations,  it could be nothing she said. She decided to do another CTG that afternoon and consult the doctor.

That afternoons CTG told the same story, so it was repeated. Dinner came, I ate and I was given my anti blood clot injection as normal.

30 minutes later the doctor decided to move me to the labour ward for closer monitoring.  Nothing to worry about,  just closer monitoring.

They wheeled me up on the bed like an invalid,  I started to feel mild panic.

Once on the labour ward I was introduced to Debbie, my midwife for the evening. She hooked me up to her fancy CTG and we settled in for a simple evening. I could see the most glorious fireworks going off at Leicester Cathedral – it was the day of Richard iii internment – so we enjoyed those while we waited. After a while, the doctor was back with a colleague.  They both checked the CTG and conferred.

“There’s a lot of decelerations”

“True but I can hear baby moving, that’s a healthy baby but best get another opinion just to be safe”

They barely acknowledged me and then they vanished. A third doctor arrived, chatted with me for a few minutes and interrupted me

“That’s too many decelerations.  I bet baby has got itself tangled in the cord. Bet it’s round a limb or something”

I asked how they could find out for sure. Clutching each threadbare straw I could.

“We need to deliver baby. Tonight”

I started shaking.

“It’s too early” I wobbled. Too early. Debbie held my hand. She explained that baby had an excellent chance, they would take baby straight to the intensive care unit and it’d all be ok.

The moments that followed are a huge blur of questions, about when I last ate, what time did I have the anti clotting drugs,  did I have nail varnish on and faces introducing themselves Dr such and such who is the anesthesiologist, Dr Jo Bloggs who will be doing blah de blah until Dr Sharp. Brett had just arrived having broken the sound barrier to get there and I was mid text to Claire, a family friend who lived close to the hospital. I’d been told that as I’d had the anti clotting drugs an epidural could cause me to bleed into my spine and paralyse me so a general anesthetic was the only way forward. That meant Brett couldn’t be in the room with me so I was asking Claire to come sit with him.

Dr Sharp told me off for texting, and explained the mile long risks yet again.  This guy was a no bollocking or sugar coating kind of guy. I trusted him immediately.

They got me into a gown, and wheeled me off to theatre. All the while,  Debbie and another midwife who’s name I forget were chatting and cracking jokes with me, giving my hand a squeeze and letting me know what was happening.

Theatre. The smell alone made me want to vomit. But there was no going back. I was introduced to another doctor, he reminded me of someone and I relaxed a little but then Dr Sharp put a huge mask over my face and pinned me down. I could feel someone at my legs wrapping them in what felt like air bags, then I heard Debbie tell me she was popping in my catheter (attractive) my arms were held down as drips and an arterial line were placed. My BP had sky rocketed again, all the time I was begging Dr Sharp to take the mask off but he wouldn’t.  No sugar coating on this guy. He was calm, rational and squeezed my shoulder supportively. He kept pumping me full of drugs to bring down my BP and got someone to hold my hand. He was so supportive even though I was quite demanding and having a panic attack. He wouldn’t start the procedure until he had my BP under control and that took a fair while. But, eventually,  it did. The next thing I remember is Dr Sharp telling me I was about to go under and then the next he was shouting me awake, telling me that it was all done and Tiddler was in neonatal.

“Is the baby ok?” I croaked.

“Baby is very very small but SHE is fine”

She. A girl.

“Where’s Brett?” I stammered, Debbie then popped up and told me he’d gone to see the baby. She told me how beautiful and strong she was.

“You’ve got a fighter there” She smiled.

I blinked back tears and hoped Brett would be with me soon. Drugs can be deceiving buggers, I drifted in and out of conscious and then Brett arrived.

All decked out in fetching burgundy scrubs. He looked as white as a sheet and nervous. But kind of giddy.

“Is she ok? Why aren’t you with her? Did you take any photos?” The tears came flooding out with my concerns.

“She’s fine!” He laughed, he repeated how small she was and that she needed help to breathe by way of a ventillator and the team were putting her on a few drips (antibiotics, glucose and caffine) but he’d not got any pictures yet.

Of course I demanded he hop down there immediately and get me one. He wouldn’t,  he was determined to make sure I was ok first.

Once I’d convinced him I was ok he nipped off to change out of his scrubs and visit our girl. Our teeny tiny girl.

Born at 31 +2 on 27th March 2015 at 22.15. She weighed 2 lb 6 oz – 1155 grams.

 

Friday, I’m in love.

 

I kept drifting in and out of consciousness, occasionally pushing the magic button that released a dose of morphine. I had an IV of magnesium sulphate to stop any fits, and I still had oxygen. Brett sat next to me in his fetching burgundy scrubs,  he looked paper white from lack of sleep but he wouldn’t leave.

At about 8 am I called his Mum, she had Edward there overnight and I needed to hear his voice.

All through the pregnancy he was certain he only wanted a brother, so I avoided telling him that he had a sister. I explained that his baby was here and that when I felt better Daddy would bring him to see me. He seemed unfazed but happy.

Debbie left us at around 7 am,  her shift over. Then around 9 am I was moved from recovery to another room. I needed to have the magnesium IV for 24 hours so I was monitored closely. Brett left then to get some sleep and check on Edward. The morphine drip was removed, but the nurses were able to give me a plethora of painkillers which I found really hard to swallow. I was still nil by mouth besides 80 ml of water each hour, all thanks to the magnesium IV. But then I got a painkiller stuck in my dry throat and that tiny amount of water wasn’t enough to shift it. So I downed as much water as I could, but that made me vomit. Thankfully, a lovely couple in the next bay alerted the nurse and I was given a good old bed bath! It was actually quite refreshing, but a little embarrassing.

I was just daydreaming about having a cuddle with my beautiful girl soon when a nurse wheeled in an iPad and told me I could skype with the baby! She dialed and up popped a incubator with a tiny little bird snuggled up inside. Nothing prepared me for the wires. I’d seen her picture, starred at it until her image was burnt into my retina but actually seeing her lying there with all these extra bits keeping her alive was a shock. Then I noticed the beeps. Machines whirring and pinging occasionally. All these machines doing the jobs my body couldn’t.

I lay there for hours, watching the screen until a nurse popped into view her voice dragging me back into reality.

‘Hi Mum, we’re just going to sort out her wires and things. You get some rest and you can see her soon’

Not long after I had a visit from my Dad, Brett and his sister. All eager to see our little bird. Brett’s sister was already in tears – I knew she would be, it’s a running joke that all she did from the moment she found out baby had been born was cry (tears of happiness) My Dad looked worried but relieved all at the same time. Brett took them both off to see baby. I was so jealous that they could see her and I was still hooked up to drips so unable to move.

Day 3 of my incarceration.  My blood pressure is slowly going down thankfully but what goes down quickly goes back up.

The Doctor has confirmed pre eclampsia and I’m likely to be here a while longer.

Well breakfast was ok I guess, cereal, yoghurt and fruit juice again. Not awful but not exciting.

Lunch however…..well see for yourself

A jacket potato, cheese and Beans with fresh salad, fruit juice, yoghurt and crisps! Actually it was yummy. You can’t go far wrong with a spud. It was all fresh and cooked well, served up hot in front of me instead of microwaved to within an inch of it’s life and it was filling.

Dinner was penne pasta with bolognaise sauce.

 

I’m really not sure how I ate it. Thankfully Brett has dropped me some fresh fruit off, melon, nectarine, apple, pear and more bananas. I might need him to smuggle in a take away tomorrow!

So Tiddler is giving us some fun before he or she arrives in May! I’ve been admitted to the Leicester Royal Infirmary with high blood pressure and enough protein in my pee to suggest potential pre eclampsia.

Great. Now I need to explain to a five year old why Mummy has to stay at hospital. The same five year old who has Scarlet Fever so isn’t allowed to visit me on the ward. That depresses me more than I can say, I think the longest I’ve been away from him is about 24 hours but that was while he stayed with his Nana and I said goodbye to mine. He had a fun filled sleep over and I could have easily picked him up and cuddled him at home if I wanted (I did want to but I needed that bit of space that night)

I couldn’t do that last night, so I took it on the chin. A night away from home with my dinner cooked for me and some lovely ladies waiting on me hand and foot while I rest up, sounds awesome.

It’s not. So far, I’ve been prodded and poked, stabbed and squeezed. That dinner I was promised? Turned out to be rubber chicken with over cooked veg. Edible but not credible.

That quite night to myself was full of activity from another lady on the ward – she was quite poorly in the night and had lots of stuff going on, but she’s lovely and we’ve had a few nice chats. I guess that’s what comes from being in a ward though.

This morning was brighter, my blood pressure had lowered, breakfast was cereal and fruit juice and I have some crochet with me. Lunch cheered me up, a baguette with salad and what I think was coronation chicken. Fresh and tasty washed down with fruit juice and yoghurt.  No sign of any fresh fruit….but maybe later?

I could order dinner, choose my meal and my pud. That made me feel tons better, until it arrived.

Ok. So it’s more than edible and was a tiny bit tasty – just a tiny bit. But it’s a glorified microwave meal not a lovingly made meal to help you on your road to recovery. It’s just food on a plate. Food that brought back my dark thoughts about not being able to cuddle my poorly boy and sleep in my own bed. Food that sent me begging my friends on Facebook for fresh fruit. Food that has me trawling my twitter feed for celebrity chefs to moan to and lovely friendly food bloggers who might take pity on me a get some of their foodie friends interested.

I know I shouldn’t complain as I live in a country where this isn’t costing me a penny. The NHS is strapped for cash and this is the best they can do. But is it?

James Martin revamped quite a few hospital menus and practices didn’t he? Surely it’s Leicesters turn for that revamp? Gauntlet thrown down I believe?

So I might be going to bed underwhelmed by the food served here. But I’m not underwhelmed by the staff. They are really kind and friendly. They are working incredibly hard and with the limited resources they’ve been given that’s no mean feat.

 

 

I’m getting used to the appalled look I get from strangers when they ask why Edward isn’t at school but I’m not sure I’ll ever get used to the unsolicited advice they then proceed to give me. I often get speechless when strangers, who think that because I’m standing next to them at the bus stop, or in the queue at the shop that I am in need of their advice and opinions.

Some of my favorites:
He’ll never make friends
So, we’ve been to the park twice this week already, each time he made a new friend. Admittedly, he may never see those friends again but he has no trouble making friends.
He needs time away from you and you need time away from him
Yes, me time is always nice and it’s good for him to spend time with other people. Surprisingly, he spends a lot of time with his Dad, who takes him off out doing all manner of things and introducing him to yet more new people and new experiences.
He won’t learn anything at home
Because he can only learn in school? Pah! What about kids that go to school? Do they finish a day at school then suddenly stop learning, stop experiencing and just switch off?
He needs structure.
This has to be the worst. because I really doesn’t need structure. Sometimes he likes having a plan, but it suits us to just make a loose plan day to day and let things happen. He enjoys the off the cuff approach with the occasional firm plan in place. He enjoys it when I give him the choice of things to do on an adhoc basis, today he had a choice of our local community cafe to see his friends, have a bacon sarnie and play or our local soft play to make new friends, have lunch and play. He chose the cafe, on the short walk there we discussed bones and how they enable us to move. On the way home, we discussed the function of the heart (this is an important one for Edward, he keeps coming back to it and we repeat the same conversation. He is fascinated by the pumping action)
It’s these times he tends to ask more questions, when we’re off walking. One of his preferred activeties. He would happily walk all day if he could!

Of course he ‘could’ get all these things in school and it would be perfectly adequate but I love being the one to help him become the person I know deep down he is. Why would I want to give such an amazing opportunity to a teacher who barely knows him?

So those of you who drop by often enough may notice a few changes here and there.
It’s ongoing and I’d ask you to bear with it but in all honesty it’s likely to happen a lot! Change is good for us though, without change we can’t grow and thrive.
My whole life is a work in progress!

It’s a Saturday, so we started with crumpets and Thomas the Tank Engine in our onesies. It’s a good way to start.

Build the marble run, Edward counting the pieces and telling me which colours we should put where, cries of ”can I test it yet?”
Then we do some tidying, get out the flash cards and have ten minutes picking out the words Edward can read and flexing the grey matter over words he can’t (he can’t read many words yet but slowly, slowly)
Finish tidying, let the police in (not the band, an actual officer. If it had been The Police, I may telling you a different story) A few days after Christmas, some clever clogs decided to tip our lovely 3 wheeled Reliant Rialto onto it’s side, ripping off the drivers side wing mirror and pouring oil and fuel all over the path and road. Besides the loss of fuel, oil and a wing mirror the car was fine so we put it down to festive idiocy and moved on. A week later we were woke by the police at 3.30 am to tell us that yet again our car had been tipped. This time, it had also been moved down the street, possibly carried or dragged (Reliant’s are fiberglass so very lightweight) and placed on the passenger side. More damage this time too, the other wing mirror has been ripped off and the passenger door handle has been punched through the fiberglass so we can not open the passenger door. It made it unsafe to drive until we can fix it and with Brett’s current work load that could be some time. So he found a motorbike on eBay – his preferred model and cc, shot up to Bradford for the day and came home with said bike.  Awesome.
So he’s quite pleased with this bike, it’s in great condition, was a good price and gets him out on rides again which he loves. It will be perfect to get him to work and back and after a stressful day he can take himself off for a ride to clear his head. Again, awesome.
What wasn’t so awesome, was finding it lying on it’s side on Friday morning. We have CCTV, purely because we’ve had idiots try to steal his motorbikes in the past, so he checked the footage from Thursday night/early Friday and found a gang of youths coming onto our driveway, admiring the bike, breaking the steering lock and attempting to steal it. So the police visited to get a statement and a copy of the footage. Edward loved it though as he had a policeman visit us. It’s obviously bothered him too, he has made it clear that the ‘bad guys’ need telling off and arresting. This is the one shitty thing about our area, there seems to be a LOT of this kind of thing happening and not just to us.
Luckily we had the CCTV really.

We left Brett giving his statement, and I took Edward to visit his Nanna. He played at being a Pirate with his own treasure chest and had a squidge of some putty as his Poppa was putting in a new pane of glass. I love that he’s a builder, Edward gets to see so many different skills and techniques from him and occasionally try them out  – perfect for a boy who can’t seem to keep his hands to himself!

We finished the day as we do many days, dinner, PJ’s and Mythbusters. We love it, Edward particularly loves the explosions and stunts, whilst we find the science fascinating.

Then I read Edward The Gruffalo’s Child as he snuggled down with his huge mountain of cuddly toys. In his own bed, without tears or tantrums. That’s a big deal for a boy who just over a month ago would only go to bed in my bed.