Monthly Archives: July 2015

Dark Side of Epilepsy

Although we try and remain positive there is a truly dark side of having a family face the struggle that Epilepsy presents:

In short this includes:

  • Loosing your shit at the Tip when they close the section that you want to dump the crap filling your house!
  • Couples counselling
  • Sleepless nights – watching your son, hoping seizures don’t happen
  • Seeing every hour of the night for whatever reason makes them scream
  • Sleeping through and feeling guilty that we might have missed a seizure
  • Avoiding playdates and certain locations for fear of germs = high temp = Nee nors and hospital admission and the vague look in the Drs face when they finally admit Reeds condition surpasses her knowledge
  • Not able to work because there is no option for childcare as no setting will take a child with complex and unpredictable epilepsy
  • Arguments over nothing
  • Arguments over everything
  • Crying yourself to sleep
  • Militancy over sleep for fear of seizures
  • Panic attacks/ Paranoia
  • Feeling like you are being perceived as mental by both the medical profession and family members!
  • Desperation and despair over mood swings caused by drugs, teething and inherited bad temper!
  • Guilt over the impact of Reedys condition on Annabelle

humm i am sure there are more, but that will do for now.

Surgery T minus 6 days…. they are really going to remove some of Reeds brain!

Dont forget to check out just giving page if you fancy supporting the project we are hoping will help with Reedys rehab – http://www.justgiving.com/reedysclimb

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Family photies

This week we found out Reedy surgery will be conducted on 4th August 2015. There is not much I can comment on how we feel about this.

Although has been everything that we had been waiting for but we have never been so worried.

A few months ago I got in touch with an old friend of Ryan’s who is a photographer and booked a family photo shoot!

Have you ever done a family photo shoot?!? Well we did one last year and some bizarre people squeaked and squealed at my family for an hour till they “got it!” Then we reviewed them and got s copy of one photo. So booking a friend/photographer seemed like an amazing idea, especially when we talked about going to a field and playing whilst she took some photies!

We took our props, balks, bubbles, ribbons and met Katie. We giggled and played and hoped that she would get some natural and funny photies that would depict our family in its Raw form … All be it slightly more polished version of us!

I will add the photies ASAP…. In the mean time if you cannot wait the head to http://www.keaphotography.com to see a couple of previews and an amazing write up, thank you Katie.

X

It’s been a while!¬†

Sooooo where do I begin, probably where I left off! 

There have been a number of ups and downs since last post….. I will get the downers out the way first! 

Downs! Still no date for surgery,  that’s pretty painless huh?!? On an up note we have been for Reedy pre op and that is valid for 3 months so I guess that’s a fairly good guide. 

So that said we can move onto filling you in on all the ups! 

I cannot remember if I have mentioned much about Reedys drug regime, from start of May he was on 75mgs twice a day of topirimate (Topomax) and started 100 mgs 2xday of Keppra. It was thought that the Topomax was no longer working and the Keppra was worth a try. Since we started Keppra we have been a huge reduction of seizures (yey!) so we started a Topirimate wean. It was not until we started the wean we realised that a main side effect (for reedy) of it was stopping or reducing his ability to learn and he had regressed since January. Soooooo we have been seeing some extraordinary things including Reed learning to clap and kiss again and just this morning he began to stack! 

Stacking is becoming a running joke in our house as every development check that Reed has had he has been assessed on his ability to stack and it feels like there is a preoccupation with ones ability to stack, cups, blocks… 

Anyway tangent aside that is pretty awesome if you ask me?! I particularly like that he is kissing, not the puckered lip kiss but the open mouth slobbery “I love you” kiss! 

So we have also seen that Reedy has started to take direction, it from us but from his sister “come on Reed!” Is a common command from our gorgeous girl and Reedy trots along after her! Proud mummy and daddy! 

So other ups…… 

DLA application has been processed and been awarded, which will help no end, meaning that I do not really need to go back to work for the time being. (Although I miss adult company, so doing some beauty courses to get me out and about earning pennies evenings and weekends – Lavender Beauty on FB if you fancy a treatment). 

Ryan started his new job and is super dad evenings and weekends. 

Great west run entered and training commencing…. Still deliberating which charty to run/ wog for… Suggestions most welcome

Hummmmm scratch head and think what else…………. 

Dunno but when I remember I will write. 

Here are a few of photies that help keep us going!