two steps forward, one step back

well it seems it's becoming more and more difficult to update regularly. our schedule continues to be insane. and when we aren't bouncing around to various doctors or therapies, we are just trying to squeeze in work hours while the nurse is here. and then once she's gone, it's typically pretty difficult to have free hands to type until about 10 pm. . .at which time i'm all too eager to do nothing at all (other than a bit of reality tv).

but emmy is currently fast asleep on dad's lap after a busy day. this morning she had an appt with neurologist specializing in movement disorders at children's hospital. emmy's brain injury is in the section of the brain that affects movement. she already shows significant delay in her movement abilities. in particular, she has a very weak trunk and neck for her age. her arms and legs tend to be very tense when she is upset. and she tends to get stuck in a twist to either the right or left side. however, we are seeing some progress. her arms and legs are moving more and aren't so stiff as much as they used to be. even the neurologist said he was happy to see her hands so open and moving. so that was good to hear.

on a not so positive note, we got confirmation of what we had feared. emmy is having seizures that are finally showing up on the EEG. the neuro is starting her on medication this week in the hopes of stopping them. unfortunately, these are showing up as a really disturbing and difficult to treat form of seizures called "infantile spasms". whatever you do, don't google that term. it's scary and even more so on google. we're trying not to get lost in the fear of it, but just do as we've been doing, live in the moment and do the best we can for her. ironically (or not) as soon as they were diagnosed, they seem to have disappeared. but these type of seizures are notorious for changing and evolving as the child grows. so we pray for a miracle and hope for the best.

today we also had an encouraging OT session. emmy was awake and alert and for the most part content during her whole session. let's just say that is leaps and bounds from where she was when we started OT and she would either shut down and fall asleep or scream bloody murder.

ahhh. . .lots more to report, but i've run out of time for now. so i'll just leave you with a new photo that was taken on sunday funday.

all things emmy

last week we actually had a whole week without any doctor's appointments. that was cool! we of course still had OT on Tuesday, vision on Wednesday, feeding on Thursday and development on Friday. but that's a pretty easy week, comparatively speaking.

this week has been fairly easy too. we only have one doctor's appointment and her daily therapies. on thursday we'll be going back to see the surgeon who placed her g-tube. we've had several complications, not the least of which is the darn things keep breaking and popping out. and this is not good. . .not good at all. eventually we will learn how to replace them, but thus far we haven't been taught. so the first time it popped out, we had to trek down to CHLA to get it replaced in Friday rush hour traffic no less. and we ended up spending our whole day there. the second time it happened at 2 in the morning. so we didn't encounter rush hour traffic, but we still had to trek to CHLA in the middle of the night and spend several hours getting it replaced. the third time it happened, our nurse was here and able to replace it. and finally, last weekend, when it happened, we were able to get our neighbor (a nurse) to come over and replace it. but this is getting ridiculous since a g-tube is only supposed to be replaced every 3-4 months. and so far we've replaced 4 in as many months. so hopefully we can get a handle on what the heck is going wrong.

of course, then there's the insurance company that doesn't want to pay to keep replacing so many g-tubes. but hello. we are not doing this on purpose. and she certainly can't go without it getting replaced. oy!

next week we have a busy Wednesday. she has a follow up with her GI doctor to see how her new feeding schedule is going, check in on her reflux, etc. she'll then see her pediatrician who sees her every 3-4 weeks. finally, we'll be seeing a new neurologist that i've been trying to get an appointment with for months. this guy is in high demand and was nearly impossible to get in with. but thanks to knowing the right people, not only did we get in, but we got in in July, when they are currently scheduling all the way in to December for first-time patients. (shout out to Holly!) he is a highly esteemed movement specialist and we hope he can shed some light on some of Miss Em's movement issues.

looking further into the future, we have an MRI scheduled at the end of August. this will be in follow up to the initial MRI we got just after she was born that showed damage to the brain. this MRI, we're told, will give a better picture of the overall damage and will hopefully show that some healing has occurred.

at the end of the month we will also go in for ear tube surgery. this will be to place tubes to drain the fluid in her ears and we are anxious to get a better idea of how well she is hearing after this surgery is complete. typically, this is an outpatient surgery, but Emmy will have to be admitted overnight for observation. so i will be staying in the hospital with her.

in other news, tummy time boot camp continues. today she actually had a full 5 minutes of no screaming, just a little fussing at the end. i only captured the last minute on video and she was pretty tired, but here's the proof.


and emmy continues to enjoy a good swing. i've shared her sleeping in the swing, so here's a little glimpse of what she looks like when she's awake and swinging.

first fourth

rockin the red, white and blue. . .where else, but in her swing.