At $100 a can which lasts for 4 days she now costs more to feed every month than the rest of us…..but it’s helped, she’s happy again and doesn’t have any stomach pains anymore!
She’s been so happy all holidays, hardly complaining at all. She’s sleeping through the night now (10 hours) and is awake and more active during the day. She’s much more responsive to us, She can literally talk and laugh for an hour after meals now, and is getting better on her stomach. She’s slowly finding out what her hands are for too….
She’s getting much better in crowds of people now, before she used to sit like a stunned mullet, now she observes in her own way. I was giving her some food one day on holidays and we were at Odruns friends house, the kids were outside and we’d finished her meal and I was just sitting next to her and waiting for her to get tired, when the kids came in she got all happy and gave them a big smile and started laughing. She recognises Odruns mum and Torill, who we haven’t seen for a month got a huge smile when she came over after the holidays.
Finally, a doctor with a plan, finally, a doctor who didn’t scrunch his nose at us and shake his head and blame Jennifer’s problems on her brain damage.
We’ll continue with the milk he prescribed, if it remains the same we’ll be able to apply for a free prescription….
It won’t help with her reflux, but he had a plan for that too. He’d done his homework, he’d seen that Jennifer will have an MRI at around 1 year. He didn’t want to put her through anything unneccessary when he explained to us that he would do a few test that would involve Jennifer having to be sedated, and he would try to schedule them all at the same time along with the MRI.
You can’t teach people that skill, that skill of being organised, that skill of putting a bunch of things into one package easing the burden on the patient and the family, that skill of being able to see into the future and plan. Gotta wonder why people like that aren’t sitting at the highest level……
Not all the news is good though, whilst with that doctor I asked if he could look at her file and find out the results of her VER test.
They weren’t exactly positive, it would seem that nerve damage behind the retina is failing to send signals to the visual cortex of her brain, so basically the cables between the hard drive and the screen are shot. The result read ” uncertain cortical response from flash stimulation” I think the condition is call CVI ( cortical visual impairment )
It would fit the situation as people with CVI often see better when moving and have sensitivity towards light.
Being blind doesn’t mean that you see nothing, blind people can see lights and shadows and i think that’s about all Jennifer can see at the moment. Nerve damage is irreversible as of today, and Jennifer’s too young to even attempt something not fully trialed so we’ ll have to live with it for a while yet. Stem cell research has come a long way and maybe one day we could try something for her, there’s no guarantees because of the brain injury but to have our daughter look us in the eyes and smile would mean a lot.
It’s a pretty devastating result, you’d think that at the least someone would call us back and explain in person or over the telephone and advise us of the possible treatment or management…..but no, nothing.
It’s taken us 7 months to get this far and I feel like it’s taken 70 months, Jennifer’s been through heaps and we’ve probably aged because of it. We put up with all the negativity, all the uncertainty about the future and the endless questions that we seem to answer a 100 times before it sinks in. The looks on people’s faces that seem to say, ” why do you even bother?”
We don’t expect people to understand, unless they’re going through or have been through the same and we respect that people don’t fully understand why we do the things we do. But we expect that same respect back, we’re only trying to help our child, just that it is in a different way than one would help their healthy child.
We knew from the beginning it would be tough, we knew we would have to fight the health system, we knew we would have people judge us and we knew that life would change.
We wondered on the way home from Bergen if we would love Jennifer in the same way as we love Emma, and we do. To everyone else she might be a little strange, people might wonder how you can love and show affection to a disabled person….
On the surface things are different, on the inside it’s just the same!!