Happy Birthday TUBIE

A year ago today Yossi got his feeding tube, not so affectionately dubbed "Tubie"
Tubie is an irritating trouble maker. because of tubie, Yossi was hospitalized 5 times this year. He
attended constant doctor's appointments, and received 2 new medications. because of tubie Yossi missed tons of school and therapy, and travel and fun.

But tubie is also a lifesaver.
 now there's more fun and less force feeding.
now yossi can enjoy the pure taste of food without medicine mixed in.
 now yossi is gaining the weight he was sorely missing. he is finally growing.
Yossi's bones are stronger - gone is the constant worry that he will break or twist or bruise his limbs
Yossi has energy to play and explore
yossi has energy to reach new developmental milestones and to practice what he has already gained.

as we approach new year's im grateful for how far we've come this year and im also happy to put the trauma behind me. i have a feeling that there are good times for us ahead in 2015.

Thank you G-d for constantly leading us.

Tale of a tallis bag

After 8 years of marriage Dov decided it was time to get a plastic cover to protect his tallis bag. While he was at work i unpacked our purchases and put dov's tallis bag inside his new cover. When he returned home Dov offered his thanks and commented how nice it looked. He followed his compliments with the following statement:

every morning i daven in the same shul, so why do i keep my tallis bag at home? because we were in and out of the hospital at a moments notice, so frequently. i never knew when i'd need it, and i didnt want to be stuck with out it. now, we've been out of the hospital for quite a few months, i no longer need to keep my tallis bag at home!

Dov's statements impacted me greatly. this really is a major turning point for us.  true, we are still juggling all of the medications. and we are still in the slow process of weaning yossi off of prednisone. but yossi is tolerating the frequent changes nicely. and we are HOME in OUR HOME. our beloved cleaning lady was out sick last week and the house did not fall in utter chaos. because i am home, and i can take care of it.

when the clock changed yossi started to wake up at a normal hour again. now that several weeks and several dosage changes have past, yossi is sleeping late again. but its ok, because i can work while he sleeps. its ok bec we are home and not commuting to the hospital - an hour each way.

now im overloaded with deadlines at work and no matter how much i straigten up the house there is always something out of place. no matter how much laundry i do, it seems like its never finished.
LIFE IS BLESSEDLY  MUNDANE!

throw caution to the wind

i have a rule, 

i never visit

with a friend 

if they are sick

but today im throwing caution

 to the wind

i dont want yossi to catch 

something that his body 

cannot fight

but today im throwing caution 

to the wind

my friend has a cold

and her child does too

dov and i have bad colds

and yossi does too

true he's had a few extra seizures

with this cold of his

but he;s already sick what

 more can we loose

so today ive done something

that i never ever did

we went for a playdate

to someone who is sick

today i threw caution

to the wind

a modern day miracle

I was riding the subway today. 2 young teens (they looked to be brothers) sat down in the same car as me. they had a pack of some sort of  cards and proceeded to look through the piles and talk with each other about it.  they had no electronic devices and did not use profanity. and it was PEACEFUL.

what a shame that such a thing is a rarity. it gives me a little hope that things wont turn completely digital.an adult, i hope when yossi is an adult, people will still remember how to interact with one another.

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!

Gotcha!!

Many kids with special needs have little or no communication of any form so people often assume that these kids have a limited understanding as well.

I hereby shatter these illusions with the two following stories:

1. On sunday i stood at the kitchen counter preparing Yossi's morning medicine while he sat next to me in his chair with his nebulizer mask and a toy to distract him (so the mask will stay on). i glanced over to check on Yossi and i find his watching intently  while he slowly and deliberately pulled the mask away from is face. when i made eye contact with him, he burst out laughing!! GOTCHA!!
(thankfully he put the mask right back in place)

2. Shabbos mornings we don't have to rush anyway so its snuggle day in the zeichner household. Yossi was chilling in my bed and i was stroking his face and rubbing his back (fyi he LOVES foot rubs). my normally wiggly child laid very still with eyes closed for many long moments.  in surprise i commented to Dov that Yossi seemed to be falling asleep. As soon as he heard that, Yossi's eyes flew open and he laughed long and loud!! GOTCHA!!


 I've always treated Yossi as a regular kid as far as comprehension is concerned so I'm used to interpreting Yossi's body language. people who are around him less often are not. i love watching people's delight when they see him respond appropriatly.  not that he has to prove anything to the world but its just clear confirmation that he is taking in everything around him.  I'm absolutely enjoying this new stage where his thought process has  developed and he can understand and create humor. even though  he understands perfectly fine ,his comprehension level still develops below that of his peers because of his challenges. knowing that, makes these moments so much sweeter.  Baruch Hashem for the little things, they are a big deal!!

The Zeichner Hotel

there's this house on our street
that does not look unique
nondescript and plain
its just like the others, its exactly the same

but inside its a different scene
the likes of which I've rarely seen
guests from israel just landed
the keys to their room they are handed

now its friday well past noon
our  next guests are coming very soon
so we change the linens in the room
while singing a lively shabbos tune

the boss now vacation bound,
friends come in to watch the grounds
of course they need a place to sleep
so on the bed we put fresh sheets

then for the weekend we'll host family
so we prepare the room happily
we put fresh linens on the beds
for a comfortable place to rest their heads

on shabbos day,
 kids come to play
all are ushered inside
when the snack bar open wide
so the kids can choose their treats
and hungry moms can eat in peace

its shabbos again
what better way to spend
if not with sleepover friends
do you a see a trend?

tishrei is coming, do you hear,
suitcases rolling everywhere?
guest arrive from far and near,
do you have a bed to spare?

for each yomtov separate guests
the beds must look their best

seminary girls pop over
on their homebound stop over
while waiting for the connecting bus,
why not stay with us?


the pile of laundry now over my head
 i just want to lie down in my bed
the linens never see the shelf
Thank G-d i have help!

the linens are so comfy
and the food is so yummy
they come from worldwide
our door is open wide
welcome to the Zeichner Hotel



****This post is intended solely as a humorous take on the rapid turnover of guest we sometimes have. this post is not intended to suggest that our guests are imposing.  we are so thankful that we are blessed with space to host guests. because it is hard to get out with yossi, hosting our friends has given us the ability to enjoy  shabbos and yomtov like everyone else. Thank you to all of our amazing friends! we're praying for an upgrade so we can host you all more comfortably!****

perspectives II

Today i was reminded again, how fortunate i am to have a great support system at home, at school, and at work.

My boss assigned me a project and I told her that i'd like to take care of it next week once Yossi is back in school.

Her priceless reply: "no problem, I'm glad yossi is well and heading to school"

and she's right. with all moms (myself included) more than ready to send their kids back to school, I'm very very lucky that Yossi is healthy and able to attend.

Here's to many school days for Yossi - Happy Second Grade! :)

First day of school

Long ago? Memories.

Dov and i were looking at pictures on his phone today. we came across pictures of  yossi in the hospital and they seem like such a distant memory. funny how its only been six weeks but it feels like an eternity.  that the hospital which consumed our lives for so long , does not even get a single thought in my day. we're so busy being a family again that we have hardly noticed the time go by. Thank you Hashem for giving  us health, we're enjoying every second of it!

unBEARably cute!!

Hope

Hope comes in many shapes and sizes
Hope is for all types of things

Hope is for the blessings we want G-d to give us
Hope is for the things we want to accomplish

Hope helps the present become the future
Hope is rejuvenating

Hope reminds me of its presence, when i take a step back
Hope reminds me of how far we've come when look at my life from the outside


Here's hoping i can bottle up some hope and bring it back from vacation with me
I'd sure like to hold onto  this feeling every day:

The hopeful reality of normal family life that will hopefully settle in our home permanently

perspectives

Yossi continues to be stable and healthy after having  lowered the prednisone twice and replacing it with valium! he is holding steady in the range of 2-7 seizures a day..

from my end: zero seizures is better than a few. but  my friend says that a few is way better than many in a day.
i guess its a matter of perspective. and attitude. we've been on edge for so many months, that im dismayed at any little setback.. it has been the case in the past that any little setback, throws the train completely off the tracks. i dont want to go to that place again. ever. running back and forth to the hospital for months on end, barely making it through the day, and watching Yossi want and struggle with activities he normally performs.

Now Yossi is happy and vibrant and constantly laughing. he is crawling more often on all fours (on his own) and making more progress in steps torwards independant walking. so i guess a few seizures isnt too bad.

still,  we still have a long way to go before we say goodbye to prednisone.  so far we've gone from 30mg to 27.5 mg, to 25mg.  we've got to go super slowly because his seizures lurk just around the corner. its a very delicate balance. we've been down this road before. several times in fact. im just hoping that this time we can make it all the way.

So forgive me if im a bit gun shy but i'll try to keep my hopes up!
Maybe i'll just have to watch this video again and again until im in a better mood!
(Yes, i finally caught Mr. Giggles Giggly-face on camera)

Friends and Firsts

Here's another reason that i love my friends so much: ive last posted about a week ago and several people have already told me that they are anxious for more posts! im so lucky to have so many wonderful friends, that are always here for me and always waiting to hear good news!

im sorry that i couldnt write this past week, i was too busy planning this upcoming week's vacation. thats right- a real vacation! just me and dov on our own without yossi. in addition to school we have arranged 4 different people to take shifts with Yossi so that we can have a few days to recharge. thats huge amount of preparation but so worthwhile! i shudder to think about all the prepations that an extended trip would entail. for now i'll just be happy with several days away. im so lucky to have friends that are willing to help with yossi.

this week was also a week of  firsts:
-fits of giggles all the time
-getting off the couch to a standing position on his own,
-getting onto all fours unasisted and actually crawling several paces (he's also using this talent to try and figure out how to escape his crib)

Yossi has also continued  progress this week in:
one handed walking (freehand and using the wall for support),
 navigating stairs
bike riding
picture communication system

the sun is defenitly out this week :)

Today he did pretty good with toileting; using the bathroom almost every time and even telling us verbally once that he needed the bathroom. i wish i could figure out how to get him back on track, since he has started feeling better, this is the one thing that is still lagging behind. i cant wait to get him back into underwear.

Yossi had under 5 seizures per day this week. on thursday night we increased the dose of valium and right away lowered the prednisone a little bit more. BH he seems to be tolerating the medication changes really well this time. im hoping that this week he continues to do well, so we can keep taking steps to get rid of the prednisone forever!

Mr. Giggles

i've been itching to write since Wednesday. its such a relief to get things off my mind, makes me feel physically better when i write.  i guess i dont need the doctor anymore :)

yossi woke up early on Tuesday, of course on a fast day of all days.  his feeding tube leaked all over him. it was late enough that by the time i cleaned up the bed it would be useless to put him back to sleep, so we got ready for school instead.  while feeding him breakfast i started to yawn and Yossi thought it was funny. he start to laugh at me while calling "mom, mom" and he laughed some more. he laughed and laughed so hard until he had tears coming from his eyes. that laugh that you laugh when you are overtired, and someone tells you something so hilarious that you just cant stop. it was so suprising and so adorable that i couldnt be mad at him for making fun of my exaustion :) .

It seems that mr giggles is here to stay. He followed Yossi to school on Tuesday and every day since. Yossi will burst into fits of hysterical laughter at many random points throughout the day.it is so funny that we all start laughing with him.  sometimes i cant figure out what caused his laughter and sometimes he laughs when we call him out for giving us a hard time (with dressing or eye drops and the like). i am loving every minute of this so so so much and hoping that mr. giggles is here to stay for a very long while!!!

And since im sure somebody is bound to ask: no, i dont have it on video.ive tried a dozen or so times. every time i take out the camera he stops, so ive decided to put the camera away and just enjoy the experience. if you're desperate for some comic relief you are welcome to come for a visit!

No Sun Sunday

Not a Sunny day today,
'twas overcast and grey

Not a Sunny day inside
but there's nowhere to hide

for a mistake was made today
for years it hasnt been this way

Morning meds sitting alone
all day long with  noone else home

out for a swim and photoshoot
a little boy so hyper and cute

no wonder he was alive and happy
with no meds to squash his personality

but mom and dad are worried sick
counting seizures as they hit

why of all days to pick
with a delicate balance already in the mix

Yossi healthy but a short while
so much work neglected in a pile

life still at a dizzy pace
will i ever with this race?

eleven seizures our final number
hoping tomorrow he can recover

i need a break from all this sorrow
will the sun please come out tomorrow?

Up, up, up, up?

On Shabbos i was on a high!  Yossi was a delight the entire day! he  easily ate a proper portion at every meal (growth spurt anyone?) and he was in a great mood.  His energy seemed to come out of nowhere, i have almost never seen him like this.  In the morning he asked for his gait trainer (fancy word for walker) and he stood straight and tall the entire time (did not slouch at all) and walked all over the house.  For Shabbos lunch we were invited to our neighbor and Yossi walked quickly straight to their house and straight back with no breaks or signs of fatigue. After nap time he went bike riding in the backyard with some friends for a record 45 minutes which is double his usual tolerance. He pedaled by himself (even got himself going from a standstill) the ENTIRE time and had a blast racing and chasing his playdate. After dinner we got a suprise visit from his favorite Rivky (mommy's friend)  and Yossi shreiked in delight for 10 straight minutes when he saw her. Yossi finished off the night with crawling practice, as easy as ive ever seen it for him, with very minimal support.  i cant believe this is my kid, he is suddenly so much stronger, i dont believe any of these things have ever come so easy to him, and so many hard things in one day! if only things could stay this way! Of course the best photo/ video moments always happen on shabbos. if im lucky i can get him to show off another day.

Shabbos was a great day over all but we did have a small bump in the road :( . Yossi was awake for several hours friday night, laughing and talking and crawling in his crib. he did not sleep extra late to compensate.  enter seizure trigger #1: lack of sleep.  Yossi started to get tired an hour before his usual naptime and had several seizures during the shabbos meal. He had several seizures at the end of his big day as well. our total for the day was 7 seizures: small enough not to worry about but large enough to put a little damper on my spirits.

Yellow Busses

2 weeks seizures freeeeeeeeee! 2 scoops of ice cream for me! we did have less than 5 'maybe seizures' but no defenite ones.  in any event 5 in 2 weeks is way better than 200 a day, or even 100.
To make sure that yossi doesnt have seizures when we lower the prednisone, we have to increase another medication- valium.  the valium makes him drowsy during waking hours and makes him sleep longer than usual.   To my suprise however, the minute we lowered the prednisone, yossi did not stay drowsy by day. instead he is more alert, back to his usual personality. he is starting to talk again and be active and cheerful.

its so nice to have my Yossi back, the one who plays tricks on us and then laughs hysterically! the yossi that is healthy enough to ride home on the bus. YOSSI CAN RIDE HOME ON THE BUS!!!  its great for me, i get an extra hour at home instead of having to drive to williamsburg to pick him up every day.  luckily, Yossi loves everything about the bus! every day that he rides, he comes home bubbling over with excitement. he waves goodbye to his super sweet driver and to every bus that passes by. I think he likes the bus because he gets to be  a normal kid for that hour, riding to school with friends just like everyone else  . the sweetest  part for me is watching the neighbors' children come off of their own busses and run to greet yossi as he comes off of his. thats my block for you, parents and kids who greet yossi with smiles and open arms, who accept Yossi's differences and yet treat him just like everyone else. no wonder my whole family loves this block. i wouldnt dream of moving :)

Green Grass

Green grass and yellow busses,
these are a few of Yossi's favorite things.

i love seeing the world from his point of view.
the big wonder of little children
over things we consider insignificant.

i love those aha! moments when
i take the time to stop rushing,
i can see that yossi sees
like other kids do.

today he sat spellbound
for 15 minutes plus
watching the neighbor cut his grass
and rake up the loose peices

giggles of laughter and shrieks of delight
from the noise of the mower
and the blades of grass blowing in the wind

i never thought we'd have grass
in this city noisy and crowded

but Yossi can lie in the yard for hours
touching the grass and staring up at the clouds
as the gentle wind touches his face.

watching him brings back the memory
of the enchanting feelings of my childhood
the calmess and fun of my expansive yard
long buried beneath years of new experiences

its weird that yesterday was so long ago
in our non-stop adult lives
i never paused to realize how much time has passed

its interesting to see that small moments
come to the forefront of my mind
those peaceful moments are an osasis
and suddenly take precedence over big milestones

wishing to hold onto to those feelings
i sit down next to yossi
and watch the neighbor cut the grass

Welcome!

I finally got around to creating a blog. So.....

WELCOME,

To myself-so i can sit down on a hard day and relive all the moments that i am grateful for, all the moments that fill my heart with joy, so i can re-read about my challenges, my fears, and thank Hashem every day for pulling me through them.

WELCOME,

To my wonderful husband who is the most selfless person i know. You are my inspiration always.

WELCOME,

To all my friends who are constantly full of support and encouragement: you follow Yossi's progress on my facebook statuses, this blog is for you, a bigger look into the fun and fustration of raising yossi. thank you for coming on this journey with us!

HAPPY READING!