It’s probably been too long since I’ve informed anyone about Jennifer’s actual medical condition, it doesn’t really make for pleasent reading but here it goes anyway;
The weight thing:
Despite our best efforts, depsite Jennifer’s better eating habbits, depsite the slight improvement in her oral motor skills she will have a feeding tube placed in her stomach.
From March this year to September she’s put on 300 grams…..
300 measily grams, it’s pretty unmotivating. We spend a lot of time and effort putting food into her, thinking of new foods we can try etc.
I liken Jennifer’s attitude to food as some people’s attitude to money, a pain in the arse but you’ve gotta have it to survive.
Despite what many may think she’s not the worst eater, she eats regularly, and generally eats well.
We’ve got her on medication that helps her process her food better, she is constantly constipated and that certainly doesn’t help her apetite either.
But the time has come where we just can’t get the amount of food into her that she needs, and the variety is just not there anymore. She’s almost 2, she’s not a baby anymore, she needs a greater variety.
Contrary to common belief, it’s not just the amount of food she is eating.
The spastcity in her muscles uses up a lot of energy, she burns up whatever reserves she has very quickly.
She lacks muscle mass, and muscle weighs more than fat I’m lead to believe.
Jennifer, on last weigh in, weighs 8,3 kilograms. She is underweight now.
On the bright side, she’s growing in length. 86cm which is somehwere around the 50th percentile.
The botox is still having an effect on her range of movement in her ankles, even 6 months on.
She needed new AFO’s, or splints cause she grew out of them. She hates her splints, so we asked for night splints too.
She needs to wear her regular ones when standing, but other than that we’ll spare her the obstruction.
Her second pair of shoes, the first without a scuff mark!! Never use these shoes, they’re impractical and needless unless she’s in her stander or jumping suit.
The botox hasn’t had an effect on her adductor muscles, and it wasn’t until we met the orthopedtic surgeon until we found out that it has no documented effect anyway.
That Jennifer will have an adductor tenotomy (cutting the origin tendons of the adductor muscles of the thigh) is nearing a decision.
There is increased spaticity in her adductor muscles, so much so that it can be hard to change her nappy sometimes.
Medicated and stable. Never had a seizure since starting the medication. Tolerates the medication well.
Although there is still epileptic activity over the back part of the right hemisphere of her brain. Which doesn’t really make sense to me, cause the left side is damaged so severly.
There’s not once Odrun and I have said, “I can’t be bothered going to that appointment”
But when it comes to going to see the eye doctors, we’ve had enough.
It goes like this,
Arrive, wait 1 hour, Jennifer gets drops put in her eyes which burn and make her pupils massive, wait another 30mins until the drops have taken effect, the doctor looks in her eyes and tells us the same thing everytime….
The optical nerves are still very white (damaged). We need to wait until Jennifer is older until she can describe if she can see something or not.
What if Jennifer is unable to describe something, and how is a severly brain damaged person who has never seen anything of any significance able to describe such things??
The doctor agreed, and we also agreed that she reacts uncomfortably to light. Sun light she hates, light early in the morning and she’ll close her eyes, just like you and me.
I asked for a diagnosis, which we actually never have had,but the WHO has quite a large list when it comes to diagnosis’s and the doctors could never agree.
Jennifer’s is now diagnosed as;
H54.1 Severe visual impairment
Visual impairment category 2
That diagnosis can be upgraded, so they’ve erred on the side of caution. Can’t blame them really.
Changed chairs, new bath and new pram.
Jennifer has never sat so well as she does in her new chair!!
She may look strapped down, it may look sad.
But Jennifer’s body needs stabilising, she needs something to help her control it.
She eats better in her new chair, she uses her hands better and I think she generally likes sitting there.
She can hold onto a spoon for long periods of time and she can find objects again if they’re interesting enough.
Her pram is much better equipped for winter, she sits better and it’s easier to push around than the other one. It’ll also fit into a larger car when that time arrives and it can be strapped into that car directly.
Her bath allows Odrun and I to bath her in a comfortable position, for her and us. She loves bathing now, she even splashes with her legs sometimes.
Pretty exhaustive list isn’t it?
It would seem that her body is becoming worse, and probably quicker than I imagined. What’s happening on the inside is anyone’s guess.
For us, the parents of the severely disabled child, not much can shock us anymore. We live our lives as if this is normal…….
I struggle to interpret the doctors when they talk about the operations, the lack of weight and the increasing problems, are they putting it gently becuase they’re being polite or are they putting it gently because they think that worse is to come?
They’ve never put anything gently before, quite the opposite…….
Life with all of these complications, it would probably be pretty miserable right??
Not for Jennifer though, she smiles and she laughs directly in the face of this adversity.
She’s an inspiration in spite of the fact she is a multihandicapped child.