Friday, June 13, 2008

just recently left the neurologist's office. what follows is what we now know.

hilina had a pretty massive stroke, most likely at birth. it occurred
on the left side of her brain and is formally known as a "left middle
cerebral artery stroke." this stroke on the left side of her brain is
what has caused the semi-paresis (delay) on the right side of her
body, most prominently evident in her right arm/hand. when a stroke
occurs in a section of the brain, that part of the brain essentially
dies and disappears leaving a hole that is eventually filled with
fluid. from the MRI film that we saw, the hole is very large. in fact,
the residents and drs at mt sinai who met and worked with hilina could
not believe that this particular MRI actually belonged to her. in
other words, she's miraculously "normal" considering the damage done.
the official name for this damage and her condition is "spastic
hemiplegia cerebral palsy" which just means injury to the left side of
the brain that will cause a right sided deficit. the good news about
this is it's a non-progressive condition. so the damage that's been
done is over and will not degenerate. the bad news is that the hole is
large and occupying the part of her brain which should control her motor
skills AND her language development.

other news is that her epilepsy is also a result of the stroke
and therefore not another issue all its own. essentially, the nerves
along the outer ring of the hole in her brain are damaged and as a
result misfiring causing seizures and the hundreds of partial seizures
that she has everyday. apparently, these damaged nerves sometimes join
forces and form their own network resulting in a major seizure like
the one she had not too long ago that first alerted us to her
condition. her neurologist stressed that we now need to really keep
her partial seizures down as much as possible with her medication. so
we'll be working on getting the perfect dose over the next several
months and years as she continues to grow.

next steps include: going to a pediatric hematologist for blood work
to see what her genetics are and if there are any signs of potential
blood clotting apparent in them. this is necessary because we don't
have any history of her bloodline. he then referred us to a dr who
runs the rusk institute in manhattan, an institute devoted to world
class physical therapy to developmentally challenged children. and he
said that even though hilina is on the very mild spectrum of its
patients, she may decide to take her on for therapy once a week.

all in all, hilina's potential to recover from her right sided delay
through lots and lots of hard work is endless and something that can
in fact be reached with consistent therapy 7 days a week, 365 days a year,
for the rest of her life. and she's a determined little bugger, so we're
hopeful. but it's very important for us to continue to work with her
arm - stretching it, opening her hand, pulling her fingers, pulling
her arm over her head, anything that pushes, opens, and deepens her
range of motion so that her arm grows properly. because once it's
stuck in the L shape she likes to hold it in, there is nothing that
can be done about it. ultimately, her condition will continue to
reveal itself as she continues to grow and either hits or misses her
developmental milestones. for instance, if her right leg is as
affected (which it doesn't seem to be) as her right arm is, then she
will no doubt have a lot of trouble walking, etc.

i think this about covers it so far. i'm sorry it was so lengthy. and
thanks again everyone for being so supportive. in the scope of
possibilities, we think this is one of the best ones we could have


perroguapo said...

Wow guys. At least it sounds like it is totally manageable. Let us know if we can help and I hope you all are able to have a fun weekend.

wmw said...

Thanks for sharing the news; wish I could do more than send you these best wishes for peace and progress in the days ahead.

Jennifer & Ty said...

Bless little Hilina....she is in our thoughts. I truly believe she will amaze you and all of us.

T.R. said...

Hi, I'm officially de-lurking to let you know that your beautiful family is in my thoughts. Children are amazingly resilient. So much more than adults! Hilina is going to thrive especially since you caught this at such a young age and the two of you are dedicated to doing whatever it takes.

Cloverland Farm said...

our thoughts and prayers are with you guys. sounds like there is tremendous potential for amazing success. take it day by day.

Becky said...

I really don't know what to say other than I will pray for God to grace you with strength as you raise this precious treasure. I know life can be overwhelming enough in your third trimester without added stress. May you find many things to laugh about in the days to come. Hilina is so blessed to be home with you!

paige said...

If Hilina has managed to achieve this much with little attention paid to her rehabilitation (while in Ethiopia--not like you've been ignoring her) think what she'll accomplish with a full complement of medical attention. The mind boggles! She is such an amazing baby--I predict great things!

Jesi and Joe said...

Children really ARE amazing and their ability to impress us all is readily apparent in how well Hilina is doing. I have faith that she will continue to amaze the Drs. and do well. With parents as incredible as you two... there are no limits to the possibilities of how well she'll do!

courtney rose said...

Sweet, sweet Hilina.

Thanks for the update- such an amazing tale her life has been thus far. To have survived such a traumatic beginning in life shows what a strong little gal you have there in your hands.

I also read your write-up regarding your husband, Ben. Your journey together will be full and bountiful with your little ones. The obvious respect and love you have for each other will carry you far- it's so wonderful to have your best friends hand to hold when things get tough.

bethany weaver said...

Love you guys much. Thanks for the updates. Hilina couldn't have better parents!!!

Jen said...

Hilina will surprise everyone, I'm sure of it. She's a feisty and determined little gal and has parents and a sister that will be there for her at every step. We're thinking of you and sending you all LOTS of love, peace and acceptance as you go through this journey. I wish we were in NY as I'd stop by with cookies and take the girls and dog-master for a walk. Here's sending you a virtual hug. Take care! (Oh, and Happy First Father's Day, Ben!)

Becki said...

i don't think we've ever met...but i know your ben (and lots of other mutual friends) from chatt-town, and he directed me to your blog a bit back. how great it's been to see the life ben has with you! i liked hearing your father's day thoughts about him, too. ;-)

i've been following your adventures, and praying for your recent worries with hilina. thanks for sharing your news -- you're right, better news than it could be, even with the long road ahead. my thoughts will continue to be with you all.

becki (luedde)

Anonymous said...

Anna and Ben,

Little Hilina, sweet girl. I'm thinking of you guys. Like Jennifer and Ty said, I think Hilina will amaze us all. You guys are awesome.