healthy healthy healthy

This week we are going back to the hospital but its not a bad thing: we are going for a BASELINE EEG.  i'd always hoped but never thought that yossi would be healthy enough.  now that his seizures have been controlled for a while the doctors want to see what his brain patterns look like without seizures so they will have something to compare to all his episodes.

to be sure yossi is STILL having seizures but he's down to 1-3 a week which is basically none...ive always been afraid to over-medicate him so we've always struck a delicate balance between the seizure meds,  but we were tip toeing around it too much. we never increased the valium quite enough to be able to reduce another med without seeing increased seizures.  so this week we increased his valium to make sure that no seizures are round for the eeg.  we also increased it in a larger increment than usual so the side effects are hitting him harder. i hope his appetite and energy will be back in short order.

 we are down to 4 seizure meds. we've kept this balance for a while and so we've been able to change other medications.  we switched yossi's reflux medication to another that was safer for his bones.  that in itself took many weeks of swapping bit by bit.

 the doctors dont want to adjust his seizure meds at all for a while, we havent had success reducing any of the meds.  we;ve tried each one and the seizures came back.  so while i wish he was on less medication, maybe this is the balance that he needs right now, its what works for him so im happy enough tht we have a good combination in place. so instead we will use this time to adjust the speed of yossi's feeding tube feeds (why that matters is a whole different post, it just has been very low on the priority list and we are finally at a place where we can take care of it )

i always wanted yossi to be like other kids... i got my wish.  in the past 2 months he had a cold, a stomach bug, a sprained hip, another cold... and now the beginnings of one of those yet again! while on steroids he was spared the joy of this childhood ritual but it caused him much greater ailments and risks.. so as annoying as it is that he is constantly sick , its incredibly, refreshingly normal.  so i wont sweat the small stuff, i'll embrace all the adventure that life has to offer and save the sweating for when i carry yossi up and down the stairs.  there;'s bound to be alot of sweating cuz he feels like he gained some more weight!

i cannot describe to you the feeling of seeing yossi transform into a different person as he gains weight. its done wonders for all areas of his development. as resistant as i was to the gtube surgery and as annoying as the tube is alot of the time.  im more and more grateful every day  that we got it for him.

Angel on earth

in the dim light i watch him sleep peacefully
arms outstretched like an angel

the hustle and bustle of the day has past
and now a beautiful silence reigns

i think not of tears and drama
i think not of the mess, worry, and heartache

the magic of my angel touches me
the sound of his infectious laughter lifts me up

his ringing voice propels me down the winding lanes of life
his trusting arms envelope me and make everything right

there is hope for tomorrow after all
so much fun to be had, so much good to share

goodnight sweet angel sleep tight
tomorrow the day will be bright

*written in part by my lovely softa (savta chaya hunter)

The Last Apple

Dov opened the fridge looking for a snack.
when he turned around he had an apple in his hand and a strange far away look on his face.
"whats wrong?" i asked, "its just a snack"
"this is the last apple" he answered in a choked voice*


the last apple.....
the one i wish i could preserve forever
the apple that represents so much more
the last apple from Mrs. Slater

Its been two years since Mrs. Slater passed,
she moved to the block just 2 years before that
2 years is such a short time,
it goes by in a flash

with busy lives our encounters were few.
but all it takes is a moment,
to leave an impression forever

all it takes is one moment of caring
one moment of sincerity
to know you're not alone

When she thought of us and sent over produce, even while she was unwell
When she offered us a free photo shoot the moment she met yossi

someone so unassuming leaves an imprint on your soul
with deeds that seem so small
but the love that shines through can only be the work
of a person with giant character

these are the moments that warm my heart and give me hope
these special memories follow me always
 lessons to last a lifetime




*this story took place in Cheshvan- Oct/Nov of 2014

When you dont know what to do just laugh

We are blessed with wonderful people that help us alot but there are still some days when i'm on my own.  like today for instance. Dov had night class directly after work and Yossi's aide canceled last minute.  I took a deep breath and decided to take one moment at a time for a relaxing evening at home.

 when bed time came around there was:
medication splashed across the counter
 toys scattered around the living room,
a soup bowl overturned on my lap
and a puddle on the bathroom floor.
objects were slipping out of my hands
and it seemed like everything was out of place.

its a big project doing everything myself
going back and forth around the house
and every time i was about to loose it
there was yossi all smiles
waving and giggling and chatting.

i didnt have time to get dizzy
the laughing made me take a step back
and laugh at the mess and laugh at myself
and enjoy the moment with yossi.

when there's nothing you can do about it anyway,
just laugh and embrace it and carry on

milestones + drama = childhood

if there's one thing that seizures and milestones have in common, its drama. at some point, something does not go as planned.

about 3 or 4 years ago,  i found Yossi standing up in his crib. we promptly lowered the mattress to the last level and he could no longer reach to pull himself up. since that time he had been sick and weak often and was in no shape to keep on trying.

its now been SIX MONTHS* since our last hospital visit (thank G-d!) Yossi has been getting stronger and stronger and he has begun standing on a daily basis. it began innocently enough, i found yossi standing in his bed, and he was so proud of himself that he took pleasure in repeating it at every opportunity.

I must say that i encouraged it. Im so happy that he is finally making trouble and making a mess And i thought it so clever of him every time he reached over the rails, pulling books off the shelf and throwing them to the ground! how i waited for this day!

Then came the moment that i'd forgotten could happen.  a 7 year old is a little tall for a crib but who remembered that? i heard yossi calling and i came running just in time to see him topple out of the crib. what a fright we all had and i was completely shocked given his history that he did not break any bones.

needless to say we disassembled the crib that very same day and yossi's travel tent bed took up permanent residence in his room.



* this post was written in august 2015 when it took place.  now a year has passed since that incident and its almost 2 years since we started the process of applying for a special bed. in just a few weeks the new adaptive bed will take its place in yossi's room -our little boy is growing up and getting is very own grown up bed!

L'chaim - To Life

I've stopped waiting for life to calm down.  i finally realized that life will always be hectic and we'll always be busy with something.  its just a matter of what you are busy with.

  im happy that this year was not spent in the hospital. to be sure we had plenty of appointments but its a different life. its calmer, a little more predictable with no great emergencies. I'm so grateful  for Yossi's health!

 his seizures are still here, almost on a daily basis (so he mouths alot) but with the right combination of medication the number of seizures stayed at a  steady low. this allowed yossi to grow and develop.

he grew 5 inches in the last year and gained 5+ lbs. he is saying new things and learning new skills. he is walking farther and steadier and constantly makes us laugh with his antics.

this summer was very rough- the extreme heat played with his seizures. fortunately his seizures are a little more predictable and we were able to control them by tweaking his daily meds.  we did have one incident where they piled up suddenly one after the other and fortunately yossi recovered the next day.

 its been wonderful spending family time on leisure trips and exploration this summer rather than making frantic trips to the hospital with hearts racing and nerves shot. its amazing how each tiny reduction in medication had us holding our breather waiting for it go badly. now i can look back at how much we've been able to reduce his medications.

 yossi was as happy as ever to go back to school- i can hardly believe that my baby is in 4th grade!  as the weather turns cool ive got to go buy vests and undershirts for the first time ever!- yossi's body temperature has finally regulated now that he's been stable for a while. his immune system is still pretty bad its taking time but he is slowly recovering.  we'll always have seizures and we'll always have our doctors in our family but im very fortunate that we've reached this day.

Thank you Hashem for HEALTH!! may this new year bring continued health and healing, love, together, growth and prosperity!
Kesiva Vachasima Tovah

words from the heart

i was just thinking about you as i am sitting here at work.
i miss just sitting with you and being totally comfortable.
we can do everything in the world
we can do nothing and just relax together.
you are so beautiful and do not realize how wonderful you are
everything you do is wonderful

i know it seems to be never-ending
we are in a rut and want to have things easier
all I can tell you is that things will get better
i will never give up on us
i love you and will always take care of you

-DOV

(My sweet husband sent me this note one day last week  while he was at work)