Tuesday, April 1, 2008

Still not much to report!

We had our 1st diet follow-up appointment about 10 days ago. Her labs all look great, and we could probably move up in ratio if we wanted. We haven't pushed for that yet, but may next week.

While we haven't seen a big change in #'s of spasms, we have seen an increase in Lily's alertness, and engaging with us. She's also fairly consistently signing for "more"! This is a HUGE accomplishment for Lily, and really indicates she's learning cause & effect. Naturally, she associates it with food which we want to get away from, but for now we're just enjoying the accomplisment and not trying to change it too much.

Lily has an MRI tomorrow (Tuesday, 4/1). It's just a routine MRI, to make sure the changes Lily experienced while on Vigabatrin are still gone (the Keto diet can make these changes re-appear), and also just to check for any abnormalities now that her brain is a bit more developed. She hasn't had one in nearly two years, so it's kind of a big deal.

Other than that, we're still going to start the transition to the school district next week, and get the process going for Lily's first IEP! YIKES!


Sophie's Story by Elaine said...

I hope all went well with the MRI yesterday. I love how you say "just a routine MRI". Isn't it crazy how such nonroutine things for most people seem like such a routine thing for us?!? Congrats to Lily on her consistency on signing more and good luck with your IEP.

Chris Vacano said...

Having been through several MRIs myself, I can't even begin to imagine how frightening and uncertain something like that must be for little Lily. Do they use the newer "open" MRI machines, or is it the claustrophobic tube with the loud "ba-dump ba dump ba-dump bwaaaaah!" ?

Hang in there Lily! (and parents!!!) Like I told you in email, I believe she can come through this.

Be well.

Cathy said...

Hope the MRI went well. The diet takes a while to kick in sometimes. It's all of then fine tuning. I'm excited to hear that Lily's more alert and responsive! We experienced the same thing.

Noah's first IEP for Kindergarten is in May. I'm looking forward to hearing about Lily's IEP. Hope it all goes well!

Noah's Mom (5 yr. old w/GEFS+)