The Kindness of Strangers?

In February, I was waiting for my mum at the Train Station and I noticed a guy walking past staring at Violet. He then approached me and asked "what was wrong with her face". I just can't be bothered explaining in detail about Violet anymore as she is too complex, so I simply said "she was born like that".

He then said "I deserved to have a child like Violet and that I was being punished for my past sins and also my continued non belief in God". I could not believe my own ears....I then said to him that "he can not assume I don't believe in God, he has made a statement and he does not even know me" I also told him "I would not want to know a God that wished illness upon any human, adult or child".

By the time my mum arrived I was in tears and shaking.

This certainly is not the first time I have been asked what is wrong with Violet, but defiantely the most hurtful so far.

Besides the numerous stares and I mean long obvious stares not a quick glimpse......frequently I get asked what is wrong with her and whether she has been burnt is the most asked question I have had to date.

Why is it so many people stare and speak before thinking when someone is different ?

Update...

Well after all of her recovery sleep from her seizures, seems she must have had some kind of virus that set them off, as she is feeling alot more herself today!

Sick Little Girl

Yesterday morning Violet had a few vomiting episodes and by the afternoon she was seeming back to normal....ate her dinner well, then at 3.30am this morning she was calling for me and vomited another 4 times between this time and 6.30am.

During these hours she also had more seizures. She then slept all through the day besides 1 hour, I woke her to make sure she was okay and to check her neurological signs. She was complaining her head hurt and wanted to keep laying down to relieve her head.

By late this afternoon after I had to wake her again, she did seem a little more alert than earlier, but still far from herself.

Keeping our fingers crossed this is only another virus and not a shunt related prob. It's hard not to have this in the back of your mind as a parent of a child with Hydrocephalus.

Big Girls Bed

Violet has always loved her cot and we thought that when the day came it would be a difficult process to change her from her cot to a single bed.......but.......last week she upgraded and has completely suprised us!

It still is like her cot in some ways, as she is still unable to get into and out of it, but even so she is loving her new big girls bed!

Violet and Emily (7)

Opthamologist Appointment

Opthamologist appointment went well.....as usual a verrry looong wait in the eye clinic!

Did find out something that they hadn't told us about her Microphthalmic eye. It also has retinal detachment.

They knew all along from her Eye Ultrasound and MRI back from when she was only 1 week old. I just happened to ask today if there were any other probs with her micro eye besides being micro, PHPV and Cataract and they mentioned that she had this too.

I have never got reports from scans etc, usually have to request. Now I think I might as things are not always mentioned.

I know it will probably not affect the management of her eye and she has no vision in it anyway, but it's just nice to know all the information.

Next time she has another procedure under General Anaesthetic even if in another clinic, he would like to have a thorough examination of her eyes again. If not, he will do this at her next eye moulding.

More Tonsil Woes...

The last 4 days Violet has not been herself. Her walking especially has been really bad. Walking to one side, crab like and she has been tighter in her right foot and leg (hemi side).

Today she started vomiting and saying she was choking. Took her to the Doctor and he first wanted to rule out any shunt malfunction. Checked her other neurological signs, which were all fine besides her gait.

He examined the rest of her and discovered she has very Ulcerated Tonsils and Windpipe. So she is back on antbiotics again, it has only been almost 2 months since she had Tonsillitis!

So we are assuming as she has not been feeling herself it may be affecting the way she is walking. If her walking doesn't improve in the next week, will take her to see her Physio.