Friday, May 30, 2008

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)


p-roc's mom said...

aaack! you're going to tip over!!

Abigail said...

Hey Anna,

This is Abby Campbell (now Underwood) from Chattanooga (now Asheville). I stumbled across your blog and wanted to let you know that I have been thinking about you and your family. Your girls are beautiful! I hope and pray that Hilina's tests go ok.


paige said...


Super scary news--I'm so sorry. Are they checking for infantile spasms or have they mentioned them? Keeping all five of you in my thoughts...

Anonymous said...

We really enjoyed having you guys here, thanks for making the trip. You guys are all in our prayers. Ash

wmw said...

Sorry to hear your scary news. I'll pray; you keep us posted.