Paralysis of the brain

When a baby’s brain is damaged, it will prevent it from growing and developing normally. You can describe it as paralysis of the brain.

Jennifer’s brain injury is Periventricular leukomalacia.

MRI March 2012 3

Symptoms appear according to the degree of the injury and finally a diagnosis must be made.

On Monday Jennifer had an appointment with her new rehab team at the hospital, Odrun was away on a girls weekend so I took her up.

Seems I get the worst news when I’m alone.

December has become my least favourite month, last year it was around this time that we found out something wasn’t right, this year, a diagnosis that we knew was coming, but I couldn’t honestly say that it makes it any easier.

The fact Jennifer has a brain injury, and we know it has caused her blindness, contributed to her not being able to sit without support or roll over, she has been diagnosed with cerebral palsy.

Cerebral palsy is an umbrella term for a group of non-progressive disorders of movement and posture caused by damage to the developing brain.

It’s not hereditary nor is it a disease or contagious.

There is different types, according to the location of the injury and symptoms it presents. There is also varying degrees and people with cerebral palsy are not all mentally disabled, just like regular people, intellectual development varies.

A child with cerebral palsy may have the same intellectual abilities as the next person, but they may or may not have the ability to express themselves as “normal” people do.

Here’s a very good example

For Jennifer, we now have more people behind her, and the goal is the same no matter what the doctors say , facilitate and inspire to become self-sufficient.

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Jennifer’s first “normal” toy

It’s been a long month!!

After she had chicken pox, she developed a viral infection in her mouth and throat. Her tongue was all white and her throat wasn’t any better.

There was one Sunday where we literally couldn’t touch her, we’d try to pick her up and comfort her but she was having none of it, she screamed all day and eventually we took her up to the hospital where the doctor said she had a viral infection, most likely caused by the chicken pox, in her mouth, throat and more than likely her stomach too!!

He prescribed antibiotics, and said he wanted to see her again in 10 days to see how the antibiotics had worked. He also said we need to take a blood/sugar test, for diabetes.

As this viral infection was common amongst diabetics.

Fuck me, I don’t think Jennifer needs another condition on her list.

The thing about severely brain-damaged children is, they have weakened immune systems, and if you want to go further, life expectancy can be shortened dramatically. Brain damage can affect internal organs and so. But here’s where I have to listen to Odrun, and really take one day at time.

We got her on the antibiotics, and 2 days later she had an allergic reaction to the medicine. Her stomach turned all red and we were back at the doctors questioning it.

Our family doctor was away so we met a Danish doctor. He was really upbeat, no problems about the reaction, put her Zyrtec and it’ll clear it up.

Sure enough it did. But what I remember most about him was the positive and non-judgemental way he talked about Jennifer.

When I lifted her shirt up he saw the scar on her stomach from where the shunt tube is placed. He asked what it was and we explained. He gave the usual concerned/sympathetic sigh but soon bubbled up again and said ” I bet you have to be quiet as a mouse when you go into her bedroom at night to check on her?”

“Yes!” we said

“Ah, blind babies are amazing!”

I wondered if he understood the severity of Jennifer’s brain injury but none the less he went on for a while and was so enthusiastic it left us both with smiles on our faces when we left, can’t remember the last time that happened.

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She’s off the reflux medicine and hasn’t shown any problems with that. So it was definently the dairy food intolerance that gave her reflux.

Jennifer’s become cheeky at night now, we put her down around 7pm and about 10pm she has decided to wake up, talk and laugh to herself. When we come in she bursts out laughing, like ” haha I got you to come in”

It can be very frustrating cause we are usually pretty tired at that time and want to go to bed, but at the same time you can’t help be charmed and amused at how gorgeous she is!!

She’s making new sounds now, her lips closing and opening making a popping sound, and we’ve made a game out of it. She loves it!! When Odrun came home from London, I swear she said mamma. It might have been an accident, but at least we know she can make those sounds.

She’s starting to put a tiny bit of weight on her legs when we do exercises with her, the concentration and satisfaction on her face when she pushes herself up again is beautiful, she smiles and laughs at herself….she’s only different on the outside!!

We’ve been to a sight and sound course, really great hearing a man who has been working with children like Jennifer for 40 years talking about sight, and how and why it plays such a huge part in our own development.

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He mentioned some things that are just so incomprehensible, like that Jennifer could possibly see just like us, just that because her visual cortex is so badly damaged, the brain doesn’t recognise what the eyes are seeing! I’ve been sitting on that info for over 2 weeks, and I still can’t fathom what that actually means.

Anyway we will find out for sure after new years, she has an EEG and VER booked for the 18th of December. The EEG to diagnose Epilepsy and the VER to determine if the nerves behind her eyes are sending signals to her brain.

The last VER came back as “uncertain visual cortical response” which means that she can’t see anything, but has later been changed to inconclusive.

Jennifer’s been judged and analysed on a daily basis, and every time we feel like we’ve gotten over what the last doctor said, another one comes along with another judgement.

There are 2 types of health care workers, the one’s who base their treatment on facts and the one’s who base their treatment on their own opinions.

When the doctor described why he gave her the diagnosis  CP, he was using medical facts.

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But he went on, whilst we know that Jennifer may never walk, this doctor was adamant that she never will.

It’s not a fact that Jennifer will never walk, it’s just a possibility.

That’s the kind of doctor that used to piss us off, but now this is the kind of doctor that you draw inspiration and strength from, and look forward to maybe one day seeing the look on his face when Jennifer walks into his office!!

Almost one year old, and a quite a few hefty diagnosis’. When she was given CP, I looked at her and thought well now it’s official. I turned and looked at the doctor again, then turned back to Jennifer…..she just smiled.

And that says it all for me, it really doesn’t matter what you call her, what problems she has or may have in the future or the ever-growing list of diagnosis’.

All that matters is that beautiful big smile, it means more than words ever could.

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