oh, the things we can do

oh the things we can do
when seizures go away from you
look at how much we play
every single day

you take a long ride on your bike
to shul on shabbos you can hike

when we go on fun trips,
i don't need to hold you on my hip

no need to lift you high,
to stand by yourself you try

i don't have to worry that you will fall
as you walk down the hall

you go up the stairs and down again
and then you cruise around the bend

crawling on all four,
what else is in store?

slow and steady over here
you'll soon be back in underwear


at the end of the day you are so tired
but from your stamina  I'm inspired
you do not collapse in a heap,
while the day is still at its peak.


i think need a nap
to keep up with the tricks in your hat

you are healthy and strong
and you laugh all day long
you tap to the beat of every song
i've waited for this for so long

oh the things you can do
when seizures aren't near you

no news is good news

Like everyone else I've been busy juggling work, housework, back to school, and yomtov. Unfortunately that leaves me with no time to post updates on Yossi. Today blogging is my top priority, time to do something for myself!

Yossi is doing Great! it is such a Relief!!!!!!!
we just had a stretch of 3 days completely seizure free and it felt so good!
today we went back to seizure land with a string of 4 seizures in a row a present from super early wakeup combined with the raining weather in the morning. overall though yossi's seizures have been holding steady at under 5 a day and he is finally able to live again! without seizures disrupting his day every few minutes, he is even gain new skills.

over the 3 week summer vacation his communication skills completely disappeared because he was missing the intense practice that he usually gets. baruch hashem now that school is a few weeks in, his communication is back, he is making clear choices of food and activities, and using his "yes/no" and "i like/dont like" cards to have great conversations with us. he even added a new word to his verbal repertoire : cantaloupe (and its about time too because he LOVES cantaloupe)

Yossi is making such wonderful progress all while tolerating the rapid changes in his medication. we've continued decreasing Yossi's prednisone and we have now reached the halfway mark! usually every second decrease is combined with a slightly increased dose of valium to keep the seizures away and thankfully he is not too drowsy (a side effect of too much valium). it does make for an interesting schedule, because every time we make a change, yossi sleeps longer while his body adjusts. he has arrived at school well after 12 noon on more than one occasion. if we were to wake him up it would trigger his seizures so we definitely live by the rule "never wake a sleeping baby", ok he is not a baby, he is a very big boy who is clever and growing, and he has an awesome school that is totally understanding.

so if you wonder why you havent heard any news in a while, its cuz I've been busy driving yossi to school at all kinds of strange hours :)

G-d's Humor

G-d has a funny sense of humor. All the time.
Sometimes we get it and sometimes we don't.

G-d always listens to our prayers.
He answers in ways we would never expect.
He answers when we expect it least.

I always try to see G-ds hand in everything that occurs
and when I'm privileged to see it clearly
G-d amazes me over and over again

i never tire
of that feeling of wonder
of seeing all the pieces come into place
even things as small (or big if you live in nyc) as a parking space

today was one of those days
where g-d brought a gift to my doorstep

my older brother lives across the country.
between the time difference and our schedules
we are not in touch very often.

family is everything to me,
and i always wished that we'd be closer

out of the blue he called me
to say that he is here in town
he came over to visit
and spent a nice evening with my family

its so good to see my brother again
is like a weight has been lifted off my chest
a long day of cooking
turned into a wonderful afternoon

it means the world to me
for my brother to see that I'm happy
that we are all healthy and in a better place

my heart soaring all day
from this big surprise,
from this feeling of wonder,
that G-d settles everything
when its meant to be

it amazes me all over again
that just when we despair,
Hashem takes care
He gives us what we need

Hashem just gave me a
huge boost,
a big dose of encouragement

i feel a huge sense of relief
and a tangible belief
that everything else that I've been asking
and praying for will indeed come to fruition

i see it so clearly, in this moment
i wish i could hold onto this elation and clarity forever

Nothing is too big

nothing is to big or small for G-d! in the last 24 hours:
1. yossi has been completely seizure free
2. the credit card company blocked a string of fraudulent charges overnight
3.i got super close parking spots at all the stops i made yesterday
4. the timing was very tight this morning but dov drove yossi to school anyways on his way to work so i could stay home and rest (and take care of other urgent things like typing this post)lo and behold there was no traffic at all and dov is on time for work
5. our favorite family-family gabay-sent a representative to be our guest for tishrei
6. said family member brought a huge box of DAMYEL :) (heaven french chocolates that i thoroughly enjoy)

thank you Hashem for these wonderful gifts! i can't wait to see what else He has in store for me this year!