January 2009 Archives

Friday morning we returned to the Kenepuru Hospital in Porirua to meet with Josie's pediatric neurologist. We arrived early and once again went right in to meet the doctor, to the dismay of both Sophie & Josie who had just started playing with the excellent collection of toys in the lobby.

The build-up to Josie's last appointment was much more dramatic: it was our first opportunity to meet with the neurologist, the specialist who was managing Josie's case, and we were double-booked with another patient as the doctor was about to go on leave for two months. We were told to arrive early, and hopefully the other patient would cancel so we'd have longer than half an hour to meet with the neurologist.

Happily they did and we were able to spend over two hours meeting with the doctor and five of her staff. She reviewed Josie's case in detail, spent a good amount of time observing and interacting with her, and left both Brandie & I feeling quite a bit better about the quality of care Josie was getting. It was a huge relief.

Friday's visit went just as well, although most of it was just us relaying what we've noticed about Josie's condition since November. Even though we haven't seen a lot of progress, the neurologist thought the fact that things haven't gotten dramatically worse was probably due to the drugs' assistance. She did go so far as to diagnose her condition as MAE or Doose Syndrome (where in the past she was reluctant to put a name on it), and has accelerated the dosage and next medication of anticonvulsants based on our conversation. Unfortunately the next drug takes 3-4 months to take effect, so we're settling in for the long haul here and hoping for the best.

On the bright side we are in a good position to manage it, with the helmet Grandma & Grandpa brought over to give her some more freedom, Sophie starting back at kindy and Brandie being able to stay home with her full-time. Our thanks again go out to all our friends and family near and far who have held us up through all of this: lots of hugs, we love and miss you all!

Yesterday we finally braved the narrow roads of the Akatarawa Valley to visit Staglands, a perennial favorite of our local friends. It was worth the trip and cost of admission, and as usual the cafe was excellent. Click on the thumbnail pic of Sophie to see the rest of the pics, and enjoy your weekends everyone!

Our sweet Josie resurfaced yesterday for a whole day of seizure freedom.  Not one seizure for the entire day.  It was wonderful but made this morning so bitter.  As always, Jake brought her into bed with us so we could all start the day together.  Usually this is when we notice the first of what turns into many seizures.  But this morning, she didn't have any.  I felt like I was holding my breath.  Could we really have two days in a row? Could this be the end of it?  How can I even allow myself to hope for that?  Sadly, while she was eating her breakfast she had 4 full drops.  I couldn't even look Jake in the face for fear I would burst into tears.

Yesterday was a gift and a reminder of how different Josie's behavior is when she's not tormented with constant seizures.  We often struggle with the question of what is just 2 year old behavior/developmental/motor skills stuff and what is being caused by the craziness in her brain.  We got to deal with several temper tantrums yesterday and screaming because Sophie wouldn't share.  Then today, we could see her winding up, compulsively touching things over and over, faster and faster until it would end in a staring spell followed by a drop.  More drooling, less ability to sit still, difficulty formulating words after her seizures.  

I am so frustrated by my impatience and inability to fix it.  Often times I want to just put my lips to her forehead and suck it out of there.  I think I've resisted posting here because if I actually look at it from a higher level, one other than the immediate care and safety of Josie, it becomes too much.  I want to cry and scream.  I feel like this doesn't fit into the rules of any problem that I've seen before.  I can't chart her progress.  There is no progress.  It's a long term battle that I can't keep myself from wishing everyday that it was over. 

On my last day of work before Christmas, we loaded up the car after breakfast and made the two minute drive to the airport to meet some long-anticipated visitors. Nearly three weeks later, on the day before I had to go back to work, we made the tearful return trip: everything in-between was a dream come true. Thanks for making the long voyage, Grandma & Grandpa - it was everything we'd hoped for and more!

The Pics

Highlights:

• spending three weeks with Grandma & Grandpa without projects or work to distract us!
• tracking their flights online with the girls as they made the 25-hour trip to get here
  
• the look of bliss on Sophie's face when we finally met them at the airport, eight months since they took us to the airport in Binghamton, as she locked Grandma into a death-grip hug
• the amused look on my dad's face when I asked if he wanted to drive home from the airport (to his credit, he adjusted to the wrong-side-of-the-car thing much faster than I did!)
• taking them to Maranui, our favorite restaurant in Wellington, after months of dreaming about it
• the confident laugh my dad made after Brandie said "we'll wake you up for dinner" when they went to nap on the first day
• the look of disappointment on Grandma's face when she realized we were having meat pies, not berry pies, for lunch
• having takeaway fush-n-chups outside on the back deck in December
  
• noticing that our new-to-NZ ferry had a painted-over "Pride of Cherbourg" on its side, and wondering what it had done to lose that status
• daily vegetable translation (capsicums, courgettes, rocket, kumara, etc.)
• "cracklin" is not a crouton, George
• playground envy of Josie's new helmet: "That's a sweet helmet, aye! Is it for cricket?"
  
• dinner at the base of Mt. Cook
  
• the train bridge between Fox Glacier and Greymouth (you'll understand after you see the pics)
  
• Speights brewpubs and their Old Dark beer

And a sampling of what we managed to pack in:

• Te Papa, lunch on the waterfront
  
• Lindale Farm, Southward Car Museum
  
• Wellington Zoo, Mt. Victoria, my office and the Weta Cave
  
• Christmas Day ferry to the South Island
• Kaikoura coastline drive
  
• Christchurch cathedral, Ashburton
• Lake Tekapo, Mt. John Observatory
• Queenstown, gondola, downtown and waterfront
  
• Arrowtown, Fox Glacier
• Helicopter tour to the top and hike to the bottom of Fox Glacier
• Greymouth
• Punakaikai, Kaiteritire beach, New Year's Eve in Motueka
• Shopping in downtown Nelson, picnic lunch in the cathedral park, cathedral tour
• New Year's Day ferry ride home
• Relaxing at home and recovering from days of driving
• Shopping on Lambton Quay, lunch at the General Practitioner
• Our home away from home away from home, Spray (Wellington Regional Aquatic Center)