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