A Journey Into The Unknown
It was Lola's first
day at reception and she waltzed straight in, bold and bright as a button, but
that didn't last long, and as soon as she realised it was a long term thing she
started getting upset and screaming every time I left, which is normal right?
Of course it is - she’s only a baby. Some things were normal. Other
things were not and once again her behaviour at home deteriorated, quite
dramatically. Stanley was settling in well in year 2 and he liked his new
teacher, and so did I.
During
the summer holidays Kenny had been sent for a cord scan, and the results were back
in. We went to the appointment full of nerves and apprehension and I honestly
couldn't get cancer out of my mind! We still hadn't spoken about it. It was
just there like a third body with us everywhere we went. It was In bed with us,
in the car, it came on holiday and when we went shopping this thing wouldn't
allow us any space, we didn't know what it was, we couldn’t get rid of it.
Nobody invited it to stay but it did. It didn't care that we didn't have time
for it, or energy. Apparently it belonged to us. We weren't getting rid of it
anytime soon and it was only going to get worse!
Primary
progressive multiple sclerosis, is what was (PRE) diagnosed. Going by the
symptoms and how long it had been there for the consultant was pretty certain
on the pre-diagnosis and suddenly this thing had a name. It really
wasn't something we wanted to hear. Id heard about this disease, I knew what it
was capable of. This is why my world was crashing down. I could see into the
future with just four words. I knew what was going to happen and it wasn't
going to end happily and I felt sick right in the pit of my stomach. I actually
felt that my body had floated into the air somewhere, leaving this silhouette
behind using all my bodily functions, my voice asking questions that my
floating body didn’t want to hear the answers to. Practicality overcame me and
I needed straight answers, again my head wanting cold hard facts and my heart
screaming ‘No this cant be happening they’re wrong I know it’
Kenny
on the other hand didn't have a clue. He didn't know what the prognosis was. He
was walking out of that appointment blind. I never told him. I just said it
wasn't nice. And then I let google do the talking. We walked out of the
neurologist’s office in a daze, hand in hand; no words were spoken between us.
We didn’t need words. The neurologist had just apologized to us. It was
serious. The walk back to the car is a bit blurred. It felt like an out of body
experience. Like someone had a remote control for us and we were just doing
what was expected.
What
was expected? Where do we go from here?
I
couldn’t help but think the worst. It was impossible to imagine anything else
other than Kenny becoming totally dependent on me, where he the most
independent and proud person I know this would kill him. Wheelchair bound,
potentially bed bound? I couldn’t get these images out of my head. I was
afraid. How on earth could I explain to my children what was going to happen?
Every single night that big elephant was back in the room again. I
said it was a (pre) diagnosis because the consultant just wanted to confirm
things with tests.
So he was referred for an MRI scan and lumbar puncture.
In
the meantime, Stanley got a bout of tonsillitis, so I took him to west call,
and a GP examined him, whilst doing so she noticed some birthmarks over his
body, and asked if he had anymore. When I said yes, and showed her, she said
that I needed to go to my GP and request a referral to the children’s
neurologist for a condition called Neurofibromatosis Type 1 (NF1) Again when I
got home I googled - even though she warned me not to - and god I wish I
hadn't, I was so scared. He had symptoms that seemed to relate with this as I
was also noticing some ASD and sensory signs. It wasn't because he was copying
Lola, it was because of Lola that I had researched and realised he's been doing
things since way before she could. So I now had another member of my family
under some sort of doctor.
You'll
now understand why when Connie was 2 1/2 I never turned up for her toddler
check up.
Ignorant bliss!
Remember
I had to go on a parenting course? Well the time had come and i
started my parenting course in September 2013 and I have to say and excuse my
French for my parents reading this but what a load of bollocks.
I
was not a bad parent! Every technique they'd suggested I already did. This
course was not for me but I had to do it, If I didn't I would be taken off
their lists. So I carried on. The second week in, there was a note on the door
of the crèche saying there was a case of slapped cheek, so I questioned them
about it as I wanted to know if it was clean, you see Connie – Mai had a place
there whilst I attended the course. They probably thought I was being an overly
paranoid but Connie was so poorly, even if I had a bunch of flowers in my house
she would instantly have a high temp runny nose and a cough, this is no
exaggeration she was seriously allergic to flowers of any kind. I'm not
exaggerating. Her pollen allergy was unbelievable. Worse than mine and that's
saying something. They told me it would be fine, the case was in the nursery
and it hadn't travelled this far, I should have trusted my instincts, which
were to turn around and go home. But I couldn't, I had to see this through for
Lolly, she needed this - even if it was a ridiculous hurdle I had to jump over,
I had to do it.
That
night Connie Mai - my poorly little baby started coughing, it came on so
quickly, that by Wednesday morning, 24 hours after the course she was covered
in a rash and boiling hot. After taking her to the Doctors they said it was
viral – As always - She was having maximum doses of Calpol and Nurofen.
She was completely naked and had a temp of 40 which I was struggling to bring
down. I was circulating air in the room with open windows but she was very
poorly. By Thursday, I took her back to the doctor who again said just viral
and on Friday I phoned 111 because she was gasping for breath and she had a
rash, she couldn't breath her breathing was very labored. She kept coming up in
really weird looking red blotches under the skin. They were almost like scald
marks and she just slept, taking little water and not even opening her eyes,
she was just laid on me exhausted, lifeless.
At
this point they sent her an ambulance, and we were taken to the hospital. She
was being sick where her temp was spiking constantly and when we got there they
examined her and kept her in for observation because of the rash, she was all
smiles when we got there, like they are, and over protective mummy over reacts
again. I was on my own because we needed Kenny to pick the others up from
school and after a while my mum and sister turned up. I had already told the
Doctor that I wasn’t confident enough to take her home and that I wanted them to
keep her in for observations at least until late afternoon and she agreed. Once
she saw I had other people there she basically forced me to leave with Connie
and under pressure I agreed. Stupid mistake, as soon as we left Connie
deteriorated once again, and by Saturday morning I took her to the walk in
center. She was being sick everywhere from her temp spikes and even with calpol
and nurofen her temperature was spiking every hour. So even the medicines
weren’t working. It was about an hour and we were seen again and sent home. The
journey and disruption had woke Connie and she was all smiles. Typical.
Once
home she slept all day, I mean all day, she didn’t feed, she didn’t wee, she
didn’t do nothing at all just squirmed around on the sofa, asleep for hours and
hours. I had seen over 5 doctors this week and not one of them thought she was
of any concern because not one of them could be bothered to observe her for
longer than 30 minutes. By midnight on Saturday, I’d had enough; she was
practically lifeless and limp. Temperature of over 40 after having both calpol
and nurofen and she wasn’t drinking and was not waking up for me. I went and
picked my mum up and we took her to A and E where once again we weren’t taken
seriously, doctors were just wondering around, not even concerned we were
there. She was being sick, burning, and lifeless and some prat of a teenager
had decided to take ecstasy and so had 5 doctors all for him. By the time they
got to my poor baby, her blood pressure was through the roof! She was severely
dehydrated and incoherent, they inserted a canula into her arm and she didn’t
even wake up. I was fuming!
When
the doctor came around to see her, she was poking and prodding Connie - Mai and
sitting her up and Connie was just falling down back onto the bed staying
asleep. They ordered tests for her ASAP.
Meningitis was what they thought.
Lumbar Puncture is what they were going to do. I was terrified. She looked so
tiny. Just lying there in a massive cot all wired up. I’m so thankful that my
friend was working that day and I asked her to hold Connie during the lumbar
puncture for me as they wouldn’t allow me in there.
Walking
down the corridor in those first minutes after she was taken was the 3rd worst
time of my life! Remember the other 2? I could have collapsed; all my energy
was zapped out of me. My legs went to jelly and I have no idea how I even made
it back to her room. Within 15 minutes it was all over and she was back in her
room. It wasn’t meningitis. It was tonsillitis! Can you believe it? All that
for tonsillitis, if they would have just given her antibiotics in the beginning
then I very much doubt it would have gotten that far. Another experience I left
feeling very bitter and annoyed about.
So
Kenny's results from his brain scan came back clear and we were overjoyed.
After talking about it and reading it through we never believed it was Primary
Progressive Multiple Sclerosis anyway, Doctors are always wrong they could be
with us too? Couldn’t They?
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