December 11, 2011

Well, it's been another week and my sweet girl is still not feeling well at all.  She's had a constant headache for over two weeks now.  The headache pain and pressure fluctuates but never completely goes away.  She's dizzy, having trouble with her vision, seeing "black flashes" and her ears are ringing.  I feel so terrible for her and wish I could take it all away.  I wish it was happening to me instead of her.  There really is nothing worse than watching your child suffering through something like this.

Thankfully there has been some positive news this week.  Esmé's MRI was clear so that means we aren't dealing with a tumor.  We've been back to the doctors this week and twice to the Ivy Eye Institute where she had numerous vision/eye tests and pictures taken of her eyes.  The test results showed her visual field is constricted and her optic nerve/disc is swollen.  Based on these results we've been given an urgent referral to a different Neurologist who specialises in ophthalmology.  This time urgent actually means urgent and we'll be seeing this new doctor in a couple of days.  The doctor we saw at the Eye Institute felt it's possible that Ez has intracranial hypertension.  Excessive fluid may be putting pressure on her brain, causing pain, tumor like symptoms and causing damage to her optic nerve.  It sounds like a lumbar puncture will be next but we'll have to wait to see what the Neurologist says later this week.    

Google has once again not been my friend.   We need answers as soon as possible but this is not the answer I was hoping for.  For now, we're taking one day at a time, trying to keep her comfortable (which isn't working very well since pain medication doesn't seem to be making any difference) and trying to enjoy and make the most of the short periods of time where her headache is less severe and she's able to be up and about.

Here are a few iPhone pictures from the last week... A quick stop at the new MEC store here in London, a stop on the way home from one of her appointments to choose our Christmas tree and time spent at the Ivy Eye Institute....

And a few more random pictures of the girls hanging out at home this week... we've been occupying ourselves with puzzles, books, snuggle time with Ringo, making snowflakes from old magazines (thanks for pinning that one N.!)  and making glass pendants and other artsy crafty goodies.  I'm thankful that Ez has been able to participate in some of the fun and also thankful that Isabel is being so patient.   We've been spending a lot of time at doctor's appointments and taking care of Ez and we've missed our usual activities and homeschool outings for weeks now.   She's a great sister and I'm proud of her.   I'm praying that Esmé gets a break from this awful headache soon.  She's been a real trouper so far but lately we're only seeing glimpses of our happy, spunky, active girl.  I'm so sad for her and I feel awful that I can't do anything to make it all go away.