“Selective Dorsal Rhizotomy, go away and have think”

Eek - a conversation I knew Bella’s Paediatrician would bring up at some point but still stopped my heart.

It’s a decision I have a few years to make, but it’s another decision on top of all the other major decisions I make on a daily basis.

I miss the days when my hard decisions were what to make for tea!
It’s not that I want the medical professionals to make decisions for us, I wouldn’t like that at all but sometimes the pressure of having to make decisions is just too much.

What if we make the wrong one, what if we do something that makes her condition more unmanageable or affects her in a negative way?

What if we don’t do something that could have changed her life for the better?

Bella has had Botox a few times now and is due for more next week but each time she has these injections there is, like most things, a risk of allergic reaction, so should we not do it?

We have had a dose of Botox that had amazing effects; we had a dose that didn’t do anything.

There is no easy answer.
I don’t really like medication, but I reluctantly agreed at the beginning of the year for Bella to start a medication that was supposed to help with spasticity but actually it ended up turning her into a completely unrecognisable little girl: she didn’t sleep, she was grumpy and extremely withdrawn.

I am grateful that I have the authority to tell the medical professionals I am not happy and she was slowly withdrawn from the medication. 

We are now in the process of trying a new medication, which I have been told has no side effects but I feel very wary now and am trying to put off starting it as long as I can.

Mainstream or Special Needs school?

We chose mainstream, a decision that I regularly wonder if I had made incorrectly, but cannot bear to move her now she is settled and has made friends.

Spend money on making memories or equipment? Go back to work or stay at home?

Decisions in the world of special needs are not only harder, but they are so lonely.

When I had my son, I would be on the phone to my mum every half an hour asking if it was okay to do this or okay to do that, I remember when he was not very old he fell off the bed.

I rang in floods of tears and just hearing my mother say “oh, it happens to all of us” instantly settled me.

I cannot ring my mum and ask her if I should allow Bella to have Botox injections, or eye surgery.

I know these are decisions that we as her parents have to make alone – Bella recently had corrective squint surgery that has been over corrected, I would hate to be in a position where I could take out any anger or frustration on someone else by implying they had made me choose what to do.

We now have to decide whether to have more eye surgery – so not only putting her through another general anaesthetic but the risk of it going wrong again.

Too many decisions, constantly – I won’t be thinking about the Selective Dorsal Rhizotomy just yet, because I think it’s the biggest one I’ll have to make.

More like this please...
 

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