Biker dude

dancing with the stars

Cruising through May

To say it's been a busy month at the Exley household would be an understatement! Baseball has started for Liam, bike season for Stephen, musical/drama festival/play season for me, and of course all of Lola's ongoing therapies/playgroups, etc. It's kept us hopping. Lola just recently decided that Topamax has to go, so she started having drop seizures again to further illustrate that point. We're down to 25 mg am/pm, and will continue to decrease after we hear from the neuro on Tuesday. Of course these things tend to happen on long weekends and holidays. sigh. She hasn't bonked her head though, so we're just keeping a very close eye on her every second of the day. Her next IVIG is scheduled for May 31.

Lola's swimming!

Lola goes with her Developmental Specialist, Deannie, to Cardel Place to swim. She loves the lazy river - and has a blast when they go.

May's here

Lola had her ivig yesterday, and although it took 6-8 tries to get her iv started, once it was in she fell asleep for two hours. She did great. I love how she has so few seizures (like...none since yesterday early afternoon) right after the ivig. It's a miracle for sure. We went to visit some hospital friends, and Lola was giving out hugs all over the place with a big smile on her face. What a darlin'. She only hugged the people she remembered - Doods (one of the cleaners we've known since inpatient), Zenaida (our fave nurse), and Jane (our fave charge nurse). It was a crummy day, but it's done for a month. Next visit is May 31.

Get ready for a whole lotta pictures!

While cleaning the garage, Steve came across Lola's beloved Hedgehog book.

Daddy got a new camera for his birthday, and although she was none too compliant with the photo shoot, Lola was indeed his first victim.

These pictures are important not just because of the new camera thing, or the beautiful child thing, or because Lola got a new hat (yes, another one) - but because she's never been able to play in her playhouse. Last year she wasn't mobile enough, and was pretty much housebound. So today she checked it out - she wasn't in a great mood, but that's okay.

Is it Spring yet?

I don't know why we're surprised when schools are closed (not mine, though!) in late April due to snow. You'd think we would have realized what the weather's like out here. Apparently not!

I attempted to upload a video (for two days) of Lola riding her bike, but it just won't load - it's too long, I guess. Her physiotherapist brought out an adapted two-wheeler (really a 4 wheeler) for her to try - and Lola was holding onto the handlebars with both hands (at times) and pedalling by herself. It was so cute to see. She didn't like the wind and got distracted by sightseeing from time to time - but she still managed to ride a bike!

Lola is going to be attending preschool next year at the local rec center. Steve lined up at 6 am on a Saturday just to get her enrolled. She got the 2nd last spot, and we're very excited. Lola loves other kids - and she'll get to go swimming regularly too.

Seizures are about the same - around 3 per day. Her ivig is on Monday, and she always does better afterwards. We are still bringing on another med, which won't be up to full dosage for another few weeks - hopefully that will help. sigh.

Liam's going to be starting baseball next week, and he's pretty excited to be on his team b/c it's sponsored by Dairy Queen! Lucky guy!