July 2009 Archives

Sophie loves pretending that she is various things.  She also loves to include Josie and I in her pretend worlds.  Here are a few of the sessions from this week.

Lets pretend...

We are a family of ponies.  I am a golden pony with super powers.

We are a family of super hero tigers.

We are a family of spider super heroes. (Josie got tied up in the web, aka Jump Rope during this little session)

We are a family of fairies.  I'll be Silver, you can be the Fairy Godmother, and Josie can be Tinkerbell.

We are a family of lions.  Let's eat our meat like lions.  Get your claws out.  I caught an antelope.  Lets rip the skin off and eat the meat. (uhhhh)

We are a family of magical kittens.

It gets pretty interesting trying to remember exactly who you are at various times of the day.  I'll be flying around the living room only to find out we are now the hunting tiger family.

The planets aligned to give us a weekend off and some fantastic weather, so we headed up to Mt. Ruapehu Friday evening with some friends. Sophie had her first ski lesson and we got to spend some much-needed family time together. Click on the thumbnail to see the rest of the gallery. Hooray for weekends!

We've been nervous to post this news because we fear the bad news so much that we don't want to share the good news.  We're screwed up.

We are very, very happy to announce that Josie has been seizure free for over two months now!!!!!!  There aren't enough exclamation marks to convey our excitement!!!!!  In further detail, she has only had 5 seizures in the last three months.  It's such a huge change from the days of 50+ per day. This wonderful improvement happened after we added a third medication, Lamictal and tweaked the dosages of her first two meds.  She is clear and has been developing in enormous leaps.  She still has some side effects from the medications like shakiness, aggravation, and possible small twitches at night while she sleeps.  

We see the neurologist at the end of August and will see what the plan is with her current medications.  Last time we spoke, she wanted to try to wean her off the first medication, Clobazam, as it is usually only good for short term treatment.  We're nervous about changing the "magic formula" in fear that her seizures will return.  We'll see.  

Thanks to everyone for your constant support.  Josie is a very loved little girl.