hilina frances (free mind, free consciousness)

so i think probably i have mentioned before that hilina has erb's palsy which was causing the weakness/delays on her right side. or we thought she did. but then when we went to see her neurologist he encouraged us to make sure that it was erb's rather than just assuming. and since testing nerves (erb's) was more difficult for her, we opted for the MRI. it was scheduled for last wednesday but then tuesday afternoon she had a major seizure and so we had to go to NYU instead for observation. it was terrifying. when she started therapy she began having these little jerks and twitches that looked like they were affecting her right arm and maybe her neck/face a little. and because they seemed to increase as her therapy increased we assumed it was her nerves awakening. and so did her therapists, and others as well. thank god for dr. horowitz referring us to a neurologist, because when she had her seizure i knew just who to call. he had a bed waiting for us in the pediatric unit and took such good care of us. they hooked her up to all those wires from the picture to monitor her brain and she was also being taped by camera. along with that i had an event button where every time i thought i saw one of her jerks/twitches i was to push the button and write down the time for the epilepsy doctor (who is ethiopian, they LOVED each other so much right from the start) to view the tapes more easily. she did not have any more big seizures while we were there but had enough of these "partial seizures" that she is now taking anti-seizure medication twice a day. the confusing part for us is that the right sided weakness and the seizures are related and not related. neither are causing each other or a result of the other. however, they both originate in the left side of her brain. thus, we are having the MRI on tuesday morning to determine the underlying problem which could explain both. i did not ask for possibilities, i just can't know or think about what could be wrong. for now we are just enjoying our time together as a family. it was so so great to see family and friends, but it was even better to turn on music tonight and have a little dance party just the four (and a half) of us. you know?
in other news, i am almost 31 weeks and benny has moved into position and is doing great, almost four lbs. i keep hearing that you gain the most weight at the end and am just not sure my stomach can expand much more without me tipping over.
ben totally freaks out when he sees a foot or hand move across my stomach and so i try and point it out to him as much as possible cause i like to see him squirm. and hound is still depressed.

jack and saida

and look how cute ben was in second grade (thanks sammy)

teaser

it's been a particularly bad week here which i will get into later when we're all not so tired. we have many great things to share from our travels to the southeast and a ton of really great pictures. here is one of saida that is my favorite picture of her from the wedding weekend.

as i said, i'll do a longer post when i have had some time to process everything but if you could keep our family in your prayers it would be much appreciated. here is hilina on tuesday evening.

to come off such a wonderful two weeks into such a scary few days is something i hope i never experience again. hilina is ok for the most part, still her smiling happy flirty self. i'll fill all of you in soon just please pray for tuesday morning when she will be undergoing sedation for a brain MRI.

not as bad as i thought!

so i was all prepared for it to be horrible but it wasn't too bad! we made it to the airport in plenty of time and a little tip- if you have gate assistance from ticket counter to gate like i did, you get to pass all the lines and go straight in. the girls still had to take their shoes off for security which i thought was silly, but everyone couldn't have been more helpful minus when we were getting on the plane. i thought saida was going to be a nightmare because she was so fussy from getting up at 4AM but she fell asleep as soon as we took off and didn't wake up until after we touched down. and hilina was just playing the whole time. so all in all, a huge success! we are down here and it's wonderful. see?

everyone wants to hold my babies and help and i don't have to walk up ANY stairs if i don't want to. which i did only once yesterday to go lay with peyton before bed and she talked about god's perfection and families, and cheese weenies because unfortunately for my sister, peyton takes after me, particularly my large helping from the weirdo dish.

we're off!

yesterday was a perfect mother's day - i got my first picture from the girls:

we're off to north carolina tomorrow to visit the grandmas and the cousins and my brother and sister AND i get to see my niece graduate from HIGH SCHOOL (because i am getting old, sadly). AND then i am going to see one of our best friends marry one of our new best friends in tennessee. i'm going to be out of suck city for 2 whole weeks with the блинчики. which means that i'm flying solo starting tomorrow until ben meets us next week, should be interesting. so pray that the trip goes well - i'm dressing them the same tomorrow which i usually avoid to preserve their individuality but i've heard it makes other passengers have more sympathy for you so we'll see.
posting will be lite most likely.

busted.

.

this is what we've been doing since we don't have two high chairs. now we have to buy another high chair AND a new CLEAN couch. i'm telling you all, my brain is fried. look how long hound is eating off their tray right in front of me before i actually notice. sheesh

afternoon trifecta

if you can ignore my commentary, this video is great. you get to hear them both laughing, hilina's trill and saida's shreik sneeks in right at the end. all in just 54 seconds...

h is for happy, most of the time

this picture is for my mom (and all the people at mom's work, hi!) - see how she's playing with both hands now?!?!???! hilina has erb's palsy which for her means she's super weak on her right side from about the waist up. probably she was stuck in the birth canal and when she was pulled out some nerve damage was accidentally done. she's in therapy 4-5 times a week and it's really helping. early intervention is a wonderful resource for us, especially since they come to us!

now, if only we could get her to understand that the therapy is good for her...alas, she hates it. our therapist is just as nice as she can be and spends so much time trying to love on her and help her and hilina just loses it as soon as she sees her. she's even started doing this thing when she's really mad where she trills her tongue - think of trying to roll your r in spanish - she does it when she's so mad about the therapy, and in a few years she'll replace it with door slamming when we say she can't go to a concert in manhattan by herself.


cracking herself up. this is just how she is most of the time. laughing and happy. it's awesome.

evening.


the hf and the hd (right, mary? where's hb?)


she laughs hysterically when ben throws her in the air. once i figure out how to take a video with my new camera, i will do another video of her laughing. because then if you are having a bad day, you can listen to her giggling, and you'll feel so much better.

my nieces.

i didn't take this picture, my sister's friend jenn (www.jenniferketchamphotography.com) did. but these are my sister's beautiful daughters lounging on the lawn last weekend. we are going to visit them in 10 days!!!! but i'm not counting or anything.

p.s. HI PEYTON! We love you!

more trouble every second

can you find saida in this picture? she's stuck inside the toy basket.

she gulps down her bottles in like 5 seconds and then chucks it across the room while letting out an earth shattering screech of pleasure. even hilina gets scared, and we hear it all day.

gone are her slugish days. between "swimming" all over the apartment and this whole standing thing, she is really becoming active. she wanted me to hold her the other day and i was tired so i made her drag herself across the living room before i would pick her up. now, where is my mother of the year award? for those of you who've met her, you can understand when i say it's just a matter of time before she catapults herself over the railing of her crib. she's a springboard.

a nightly ritual. i watch jeopardy to keep my wits about me, and she winds down by laying her head on my stomach. it recharges us both, i think.

i'm not sure if she likes this so much because she can hear benny or because it's so pillow-like