Wow, where to begin.

It usually takes me a few attempts at writing a post before I actually start typing. Not because I don’t have anything to say, but usually because I have no idea where to begin.  In the past month or so we’ve started more therapies, celebrated a few birthdays, booked a stay at Martin House, celebrated the Little Hiccups second birthday, passed a driving test and bought a car (YIPEE!!!!!!!!!)

This week our magical mystery tour has also taken a new path.

Surgery

Jenna’s neurologists completed a surgery assessment and near enough confirmed that her brain malformation looks to be highly likely located on one side of her brain. They also confirmed that the tests suggest it’s highly likely that this one malformed area is causing her seizures.

This is big.

So big, that if they remove the malformed seizure causing area and its successful Jenna could live a life without fitting 15+ times a day. Yes, she’ll always have additional needs, with no or very limited sight and there may even be some more physical and/or behavioural diagnosis. BUT Jenna minus seizures means she’ll have a life with more freedom, less abnormal activity and a greater chance to develop and be the person SHE wants to be.

Tomorrow I’ll hear from the neurologist who will hopefully update me on the team’s final decision and give me a date to meet the neurosurgeon. Then it’s a case of talking through the evidence,  organising when she’ll be admitted and plan for a few years intensive rehabilitation.

I have a funny feeling that over the next few years things may get harder before the get better. I don’t mean this to sounds grim in any way whatsoever. You have to understand that I have one hell of a little fighter. Honestly almost 90% of people we meet are shocked by Jenna’s attitude. For example, in March this year she could hardly hold her head up. Now after a few hours of physio every other day she’s sitting perfectly on her own, with a little help pushing herself up, rolling over and given any opportunity trying her hardest to chew her big toe! One thing I’m most proud of is her perseverance to keep trying to find things. With some stimulation, Sargent Mummy’s encouragement and a lot of praise she’s reaching and finding. In my opinion without sight  this must be pretty scary.

Another thing I’m proud of a most grateful for are our family and friends. They say you know who your true friends are when things get tough. The amount I’ve put on their shoulder is unbelievable. I dared not admit to myself that it’s probably too much. Thank you is not enough for these people.

Thank you to my mum who gives up as much time as I need to listen, be there and teach me how to laugh. Thank you to my dad, the one man in Jenna’s life who she can trust and who’ll never let her down. Thank you to my brother (and Ruby Lou’s giggles) who often keeps my feet on the ground and who I admire so much. Thank you to my nan, uncle Pete and his ever extending clan – I nearly forgot how important your family is to us.

 And a huge thank you to my girlfriends. The family are stuck with us, bound by blood, guilt trips (mum), weddings etc. You’re not, but yet you’re there, to listen, gossip, visit, laugh with, share problems, send beautiful gifts from half way round the world, get dressed up with and drag me out each visit for a girls night. I couldn’t wish for better girlfriends, thank you.