An Idea of Impact

Someone was asking me weather Chloe has showing any more signs of side effects from the Prednisolone to which I explained that Chloe is one of may children who has developed 'Moon Face'. Trying to explain about how an already plump face could look any plumper I threw this together:

This isn't even the plumpest picture I had... Apparently she will go back to normal once off the meds... 2 more months to go till we're off the Pred then I think it'll be the Sabril next then we'll see...

A Really Great Day

You know how there are some announcements you rehearse in your head, anxiously waiting to tell people? Well, they're bloody hard to translate into a blog :p so I'll just hash it out and bore you with the details. I'm sure you'll pick up on the exciting bits :)

Two weeks we took Chloe up to CHEO for her EEG. All went well with the exception that she wouldn't fall asleep. Tony, our tech, was really nice about it and even tried to stretch the test but alas, no nap.  So with that I was pretty sure we had just wasted everyones time and was bummed out. 15 minutes later everything changed. We met with Dr. Sell and he was really pleased to tell us that the hypsarrhythmia* is no longer showing on the EEG. What this means, if you're just tuning in, is that the thing in Chloe's brain that has been causing the spasms is no longer present (apparently). We can't use the term 'cured' (yet) but as of the tomorrow we're going to start weaning Chloe off the Prednisolone (VERY slowly). We couldn't be happier. Today marks 33 days since Chloe's had any spasms... Here's praying it continues.


*Hypsarrhythmia (hip-sa-ryth-mia) In simpler terms, it is a very chaotic and disorganized brain electrical activity with no recognizable pattern, whereas a normal EEG shows clear separation between each signal and visible pattern.

A Good Week

Happy day after Canada Day!

What a great weekend. Kevin's parents came up, along with Kevin's little sister and Aunt Becky and Uncle Denis. Saturday night we all went to the Hartwigs' for a barbeque and fireworks. What a fantastic time. Chloe impressed us, not even flinching or getting upset with the noise or the fact she was up past 11, She even smiled during the fireworks. Seriously, a great time.

Joyously Chloe has been spasm free for a week now!! We are overjoyed with this first (of many, Lord willing) small steps. 

As it stands it seems as if Chloe's meds seem to be leveling off where as her appetite seems to have disappeared, we suspect this is because of constipation. A few nights ago she had bad go of some milk that led to some midnight vomiting which has made feeding her even more difficult. Add that to the constipation and we've had one cranky baby. We think we now know what the difficulties are so we can deal with it but prayers would be appreciated. Thankfully she is nursing so it's not as bad as it could be. When she is eating, she's on a soft diet for the next little while. Unfortunately the Prednisone seems to effect Chloe's swallowing so we've had a few choking scares. Her doctor is sending her for something called an Eating survey which means they'll give Chloe something to drink that they can x-ray to see if there's anything that causes the food to block when she eats. That hasn't be scheduled but will be coming soon.

Chloe's next EEG is July 12th so we'll have a better idea of where things are. 

Sorry for the short post.

~C

Ohhh... Pretty sparkles!