Just a Quick Note

So I don't have a lot of time to post, Bug is getting antsy and Sesame Street is almost over!

Bug had an EEG a couple Fridays ago and then a follow-up appointment with her neuro the following Wednesday. He said that there is some improvement! Woo-hoo!

It was funny, when he told us the news, neither my husband and I were expecting to hear that so we both were like "Really?!?" "Are you sure?" We weren't trying to imply that he didn't know what he was talking about, we were just shocked!

See, the thing is, since we weaned her off the Sabril medicine and started the Vimpat medicine (still on Clobazam and the Ketogenic Diet) she started having less headdrops but more small partial-type seizures.

So her background activity has normalized a bit, meaning that there are not as many spikes and slowing as there were on the previous 2 EEGs. She's still having spikes but between the new medicine and getting her ketones as high as possible, we've controlled some of the seizure and epileptic spasm activity.

This is great because the less spasm activity there is, the more room for development improvement we have!

Gait Trainers AKA Walkers

Bug has recently been trying new gait trainers. A gait trainer is a bigger version of a baby walker that offers trunk support and weight bearing. Bug borrowed the Rifton Pacer gait trainer for 2 weeks to see if it is the one for us.

This was the first day Bug tried the Rifton. Her eyes are dilated and slightly crossed from the ERG she had done that morning, discussed in a previous post.

Pros on this walker: It hold her in really well, we love the seat that supports her weight, and we really love how easy it is for her to move around.

Cons: It is very big. It takes up a lot of room front to back so she doesn't get to move very far before the long front bars bump into something.

Here's a video we captured of her at the end of her first week borrowing the Rifton. She's mostly bunny-hopping at this point but she's grasping the concept of movement!



Towards the end of the second week borrowing it, she started taking a few real steps!

We're waiting on a rep to get a Kidwalk gait trainer for us to try, we'll let you know what we think of that one compared to the Rifton and which one we'll go with.

There are several out on the market that are available but these are the 2 that are highly recommended by all of Bug's therapists so we'll be trying both of them before making a decision!