July 29, 2010

back to blogging...for real this time!


so here we are 2 months down the road and i'm feeling guilty that it's really been this long since i have posted. really, for the sake of documenting our life together as a family, i need to be better. life has been busy...and i'm pretty sure that's just how life with kids is. so i can't just sit around waiting for the calm to appear before i do a little catching up on this thing...otherwise it really would never happen.

to be honest, having three kids has thrown me for a loop. i don't know if any of it has to do with crew's situation & the underlying stress that has come with it...but it has been quite the adjustment for me. maybe part of it is that as i've been trying to "simplify" my life, i've stopped doing some of the things i love. i've decided that simplifying doesn't mean doing only those things that absolutely need to be done...it means doing the things i love in a simplified way. but i'm struggling with it because i like to do things well...i like to make things nice...but sometimes i feel like there's just not enough time for me to do it all...finding the balance between spending quality time with my kids, housework, laundry, shopping, doctor appointments, cooking, exercising, & my hobbies has turned out to be a challenge for me...and so i end up spending time trying to entertain my kids & keep the house somewhat clean...that i don't take much time for anything else. but i'm ready to snap out of it & start living a more balanced life! one day at a time... :)

many of you are probably wondering how crew is doing...and considering everything that he's been through, he's doing great! it's been so long since i've updated this blog, so basically here's what's happened since the last post: crew had gone over a month without any seizures, (this was back around the beginning of may) so we began to ween him off of one of the three medications he was on at the time, that went great. he was completely off of it, so we began to decrease a second medication & this time it didn't go quite so well. his seizures started up again & we spent a good solid week of adjusting and reintroducing the medications. he got back to being on all three medications & was still having seizures...as many as 20 a day. his seizures had changed from the twitching in his face, hand, & foot to twitching only in his face & then they'd cause him to gag & dry heave...which is never fun to watch. he was readmitted to primary's for 4 days until we got the seizures under control again...he left the hospital on some pretty large doses of three anti-seizure meds. once again, he went almost a month without any seizures and then they started to breakthrough again. so we started making adjustments again around the end of june...and that's what we're still doing. more blood tests have been done & everything is still coming back negative, which isn't a bad thing necessarily...seeing as how it's a relief to know he doesn't have any of those rare diseases. however, it still would be nice to have some answers as to why he's having these seizures, whether or not he'll outgrow them, and what we can do to treat them. a good thing happened this week though...we introduced a fourth medication called Keppra...and so far he hasn't had any seizures. you'd think that four medications would do the trick! we're slowly taking him off one of the other meds...and we're really really hoping that we can get him down to 1 or 2 medications. it's crazy, i tell you. this little boy is just so strong & he takes it like a champ. he goes in for another EEG tomorrow, hopefully it will provide some more information about what is going on his little brain.

we also just started working with the early childhood intervention program. we have a GREAT therapist coming 2-3 times a month to work with crew and help increase his strength. she is such a good lady & has been doing this for over 32 years. she's so good to focus on crew's strengths. seeing as how he's been on medication since he was 2 days old & some of the medicine decreases muscle tone, he requires some extra attention. he's doing so well though!! the last month he's started being able to lift his head up when he's on his stomach...it's been fun to watch him get stronger and stronger as we work with him. and he's getting more interactive each day...such a smiley boy, i can't get enough of it! i've always been a lover of my babies' smiles...but this one gets me all teary nearly every time i see it. maybe it's because i feel like it's his way of saying "i'm okay mom...life is good, really!" you just always want your kids to be happy and enjoy life and to know that you'll do whatever it takes to make sure that they're taken care of. how do you convey that to a sweet little baby? and how do you know that they're aware of the love you have for them? i get my reassurance from this sweet boy's smile...it's the best...