Sunday, 22 December 2013

One littleblack thing

In between everything else, I started to crochet whilesitting at the bedin hospital. I do not like very little piddly jobs but this one I picked deliberately to keep my mind busy.
Yesterday I finally completed it. A little black hedgehog/portupine bag for a friend, a very good friend.

Pictures are not great, it is so hard to take photos of black objects, especially with flash indoors, but hope you get the idea.

I used the 1.5 mm hook, so it is quite a piddly job.:D Today it already went to Bilbao for Christmas.

So see, I keep on trying to work on something. I really do.It calms me down a bit.

Tuesday, 17 December 2013

When a headache will be just a headache again?

The waiting game continues...
Last night child didn’t feel well. Drowsy and sleepy but unable to sleep, complaining about headache in the left lobe. We stayed up late, keeping an eye on her...
I’m wondering when all this will settle in? When a complaint about a headache will not make me jump up high worried that it might be another bout coming, when a headache will be just a headache again?  When I’ll learn to live with all this?
Killing time while in hospital I started to crochet a little handbag but since we returned I haven’t touched it – I just can’t put my mind into it. I will finish it, sure, but when? 
I keep lurking around the quilting blogs, voted on Christmas quilt on Quiltingallery, but I can't compose myself even thinking on anything myself. Maybe, maybe I will pull myself together to make a toy or two. 

Instead I would like to talk with other parents of a MS child, I would like to find an active online community where I would be able to ask questions and get some consolation but... With all my efforts I can’t find any.
Sure, there are some but the ones I found are slow and not actively populated. If you see a topic after a topic getting only few answers over quite a long period of time, there is no point even asking.
Helplines are even worse because answers they can offer you are so PC and regulated, so “trained”.
So all in all, when something like this hits you, you are left alone. Gaining knowledge and the wealth of experience to build your opinions on can’t be gained in just a few days so...
When, oh when a headache will be just a headache again?

Sunday, 15 December 2013


The waiting game is killing me right now. I’m the person who always prefers the known (as bad as it can be) instead of unknown uncertainty. If you know exactly who your enemy is, you can face it. Lurking around in the dark is much harder. 

Doctors had rounded possibilities for us down to two options which is already a good thing. So ADEM or multiple sclerosis? While doctors are counting oligloclonal bands....  

Not to abuse my own nails I abused internet, hour after hour, reading, reading and reading some more. I learned a lot, I must admit.

First of all – nobody knows anything, it’s still not far away from finding a black cat in a dark room....  ADEM or MS, whatsoever.

Secondly, if it’s ADEM, future is still under a big question mark as according to latest studies, over a half of children with ADEM develop MS later. To make it even more certain, girls are more likely to develop MS than boys. 

Okay, okay, I'm not a neurologist, but I'm a mother. I think this diagram is very good for better understanding about initial diagnosis. 

In our case, there hadn’t been inflammatory markers – all bloodwork was fine. Even perfect. So – not typical for ADEM. She is 11yo, so slightly into MS area. Must add that she is quite tall as well - right now 1.71 m. Not obese. Weight 54 kg. There is research results that obese girls have higher risk of MS, so that might indicate more towards ADEM.

Our girl’s test shoved unilateral optic neuritis. Typical for MS. 

Lesions are periventricular, as far as I can read the MRI, typical so called Dawson's Fingers. Another indicator for MS. 

(The full article is here if you are interested.) 

So all in all while still waiting for CSF results and follow up MRI, I have made my mind up that MS is the combination of letters which we must learn to live with sooner or later. 

Anyway, life goes on. 

Christmas wreath must be made and while left hand is still significantly weaker than the right one, wreath can be made. Sadly we must avoid holy as it is protected here but box is in abundance everywhers.

Not a perfect one, but still – first little job for my little one after the hospital. Schoolwork starts tomorrow....

Thursday, 12 December 2013

A bang on the head

Life is a funny thing. As soon as you think you have sorted it out, it turns around and bangs you right on the head. Again and again.
I just finished my little verbal patchwork draft and planned to start on „quilting” it when on a Saturday morning two weeks ago my youngest who is eleven, suddenly, loking very scared, annouced that she can’t remember how old is she. From then it went to very confused mind, reduced vision, paralysis of the left side and blurry speech within an hour.

The symptoms looked like a stroke. Ambulance was called and off we went to the hospital.
At the hospital the first scan right from the doorstep sorted it out – no, it’s not a stroke. Now, two weeks later we are back at home but still no much wiser what exactly it is. We do have two options.
ADEM or multiple sclerosis...

Diagnosis is complicated, endless test had been done, still waiting for results, so now the waiting game starts. Waiting for new lesions to appear, waiting for the test results of the lumbar puncture, waiting, waiting, waiting...

Two little lesions in the brain. That’s all she has right now. Funny enough, such small things whipped all numbers out of her head in just a moment. Now she, two weeks later, still unsure, can add 2 plus two, but 9 minus 5 is already too complicated. At the same time everything else regarding brain, seems as good as it was. Language skills havent been lost, she speaks in four languages, handwriting hasn’t changed and she can still producē a decent essay. Only math – she remembers Pythagoras’, but can’t remember very basic arithmetics, numbers are gone and are coming back very, very slowly.

To say that I’m scared... Of course, I’m scared. I’m at my whits end. I will collect myself, I’ll be a strong mum as I’m supposed to be but right now I’m scared. ADEM is bad enough but multiple sclerosis....  

So yes, that nice Saturday morning two weeks ago... November the 30th. Changed my life completely. Again...
Life isn’t a fair game, trust me.