sitting on a bus
just me and the one i love.
for a day away
5 people to stay
with our big little boy
oh the freedom of traveling light
and talking way into the night
responsibilities out of sight
reconnecting feels right
takes me back to another time and place
where he sat in the very same space
to our family we were on the way
to announce we were engaged
on the bus to yesterday
in a country far away
3 girls riding towards a new day
a friendship that would always stay
on the bus to yesterday
a couple brand new
a friendship that grew
new memories soon to go away
on the bus to yesterday
Sunday, April 5, 2015
Monday, March 16, 2015
keeping score
Yossi has been back home for 1.5 weeks.
I am definitely keeping score of all the crazy things that happened since he returned:
-our camera cable (for the computer) is lost
-our gps died
-our electric toothbrush died.
-our car needs a new engine (its only been 5 years) and the dealer is making excuses as to why it should not be covered under warrantee as well as excuses regarding rental car reimbursement
-ive just about finished catching up at work and im utterly exausted juggling work, the house, and being attentive to my family.
- our city handicapped parking permit is lost.
- i got a ticket for double parking in absence of the lost permit
I'm also keeping track of all the wonderful things that happened since we brought yossi back: - Yossi is healthy and strong.
- Yossi is home. And he is over the moon about it.
-Yossi feels good.
-Yossi is happy and laughing.
-Yossi babbling and talking.
-Yossi has lots of stamina and energy, he can easily practice lots of crawling and make strides towards independent walking-
-Yossi is finally eating and drinking for the first time in months ( im thinking growth spurt after losing 4lbs from vomiting so much in the hospital. I don't actually mind the weight loss so much because as yossi gets bigger,its now getting harder to lift him) -we also have amazing friends who have been our anchor and encouragement who have been checking on us even after we came home.
It would be lovely if everything was smooth sailing all of the time but that is simply not realistic . so when the going gets tough, and overwhelming, and i just cant seem to get back on track, i remind myself that Yossi is healthy and i count my many blessings: all the stresses of daily living.
- our city handicapped parking permit is lost.
- i got a ticket for double parking in absence of the lost permit
I'm also keeping track of all the wonderful things that happened since we brought yossi back: - Yossi is healthy and strong.
- Yossi is home. And he is over the moon about it.
-Yossi feels good.
-Yossi is happy and laughing.
-Yossi babbling and talking.
-Yossi has lots of stamina and energy, he can easily practice lots of crawling and make strides towards independent walking-
-Yossi is finally eating and drinking for the first time in months ( im thinking growth spurt after losing 4lbs from vomiting so much in the hospital. I don't actually mind the weight loss so much because as yossi gets bigger,its now getting harder to lift him) -we also have amazing friends who have been our anchor and encouragement who have been checking on us even after we came home.
It would be lovely if everything was smooth sailing all of the time but that is simply not realistic . so when the going gets tough, and overwhelming, and i just cant seem to get back on track, i remind myself that Yossi is healthy and i count my many blessings: all the stresses of daily living.
Tuesday, March 3, 2015
A Tale of 3 cities
1. FLORIDA
After many attempts we finally got medical clearance for yossi to fly! and he stayed well, long enough to actually travel somewhere! school vacation just happened to be at the same time, and we were due to start the ketogenic diet the following week which would render Yossi unable to fly again for a handful of months. so after 5 1/2 years we boarded a plane to FLORIDA! we've flown with Yossi when he was a baby but the air travel experience is sweeter now that he is old enough to appreciate, and remember it. Florida is always beautiful (had the pleasure of living there for a year) but there is something especially refreshing to visit in the dead of winter, leaving the bitter cold behind. now i understand why there are so many ardent snow birds!
I was quite nervous about flying with Yossi. i wasn't worried about how he would handle it (he is really easy-going) but i was more concerned about the hassle of security and transporting medicines and adaptive equipment and how we would handle the tight (maneuvering) space on the airplane.
We were fortunate to have a wonderful experience with jetblue airlines, starting from the patient customer service rep, who spent 1.5 hours on the phone with me, picking out the best flight times for us and explaining all of the handicapped accommodations that they offer.
with 6 carry on bags PLUS the car seat and stroller (and 2 checked bags) we were quite a sight. it took quite some time to unpack loads of medical liquids and get all of our stuff through the xray machine. TSA has a wonderful feature where you can request extra assistance for the handicapped. we had a TSA agent accompany us through the screening process, and all of the agents were extremely patient, and sensitive to Yossi's needs. There was also silent boarding at the gate and really pleasant flight crew. they even made sure we were settled on the plane before inviting more passengers to board. i have never cared about what row i was seated in , but handicapped seating (the first row) makes so much of a difference: more room to lift yossi in and out, not having to shlepp him down the narrow isles, and not having to worry about him kicking the seat of the passenger in front of us. all of these little things make such a difference as yossi gets older. it could not have gone any smoother and i cannot wait to fly again! i'll definitely use jetblue!
our trip to florida was quite short but the freedom of moving around without a coat was invigorating, as was the sunshine and the pool (yossi's favorite). we got to visit with many relatives from dov's side: grandma and pop-pop helfner, grandma and grandpa zeichner, aunt marsha and uncle phil, cousin dianne, great aunt rose, and most importantly great-grandma sally, dov's beloved grandmother may she live and be well until 120! we also got to visit with our favorite auntie shayna, uncle ari and cousins adam, and shoshana laya. yossi was completely smitten by his little cousin and the two kept holding hands. there is something incredible about kids who have little/no vocab (shoshana laya is 18 months) they are completely intuitive and in tune with each other!
Highlights for yossi included the pool, and pop-pop's new dog-doggie dylan who was very patient with all of Yossi's petting and hugs.
2. NEW YORK
our flight home was delayed several hours and we were greeted late thursday night in new york by extreme wind and frigid temperatures. friday was a whirlwind of unpacking, laundry, cooking for shabbos. sunday morning i was right back at work, and sunday afternoon i was packing again, this time for Boston.
3. BOSTON
the long awaited but not so publicized trip to Massachusetts general hospital, had finally arrived. Dov had to work so i spent the week with yossi mostly on my own. im lucky to have good friends though, maddy (who incidentally studies in boston) to split the drive with me, and leora who managed to have time to bring me meals even though she is busy shuttling to her preemie in another hospital.
our trip was to consist of a 48 hour admission to start yossi on the ketogenic diet for seizure control. now that he is off of prednisone, it was safe to try the diet. even though his seizures are currently under control, he is on alot of medicines and it would be healthier for him to reduce some. also his current seizure control has been achieved through valium, which usually only last for a handful of months, so its important to find a more permanent solution. ketogenic diet is commonly used, and has been very successful in kids with angelmans. the ketogenic diet deprives the body of carbs and sugar and induces a state of ketosis, in which the body burns fat for energy.
well, man plans and g-d laughs:He laughs at me alot! first i had to juggle some problems with the admission paperwork all while making calls to the phamacies and doctors back home to make sure that the special keto formula and the specially mixed medicines would be approoved by insurance and delivered to my house by the time i arrived home.
i was also not prepared for alot of the intricacies of the diet and i wish the dietitian would have prepared me with a step by step rundown of what to expect in the hospital.
well, Yossi hardly had time to take advantage of the wonderful non medical patient services before he got very sick. it is common for this diet to be a shock to the system which is why it is started in the hospital, but patients usually stabilize within the 48 period as there bodies adjust. however, my sensitive little boy became dangerously acidotic and hypoglycemic, which is highly unusual. he first began vomiting constantly and then became extremely lethargic and couldnt move or open his eyes. even an iv with bicarbinate (to combat the acidocis) didnt help him recover his levels in the slightest. it was extremely frightening to see a seemingly straightforward diet go wrong. each day our stay was extended and each day dov postponed his bus ticket until the decision was made on thursday night to stop the diet and put yossi back on his old formula overnight and re-evaluate the next day. by friday morning yossi was feeling better and the hospital decided to discharge us. dov had made it up to boston on thursday, so friday morning we packed up in a hurry and rushed back to new york (had no way to get medicine filled in boston, so we had to make it back home in time for shabbos)
4. HOME AT LAST
with G-D's help we arrived home just one hour before shabbos and raced to unload the car and straighten up the house. we are truly blessed to have amazing friends who prepared shabbos food for us. Yossi is completely back to himself and cannot stop smiling now that he is back home in his familiar surroundings and feeling wonderful. soon its back to the drawing board to follow up on some suggestions and find a new plan to help Yossi's seizures continue to stay under control. for now, its back to the stress of daily living.. we're just grateful to be under our own roof.
After many attempts we finally got medical clearance for yossi to fly! and he stayed well, long enough to actually travel somewhere! school vacation just happened to be at the same time, and we were due to start the ketogenic diet the following week which would render Yossi unable to fly again for a handful of months. so after 5 1/2 years we boarded a plane to FLORIDA! we've flown with Yossi when he was a baby but the air travel experience is sweeter now that he is old enough to appreciate, and remember it. Florida is always beautiful (had the pleasure of living there for a year) but there is something especially refreshing to visit in the dead of winter, leaving the bitter cold behind. now i understand why there are so many ardent snow birds!
I was quite nervous about flying with Yossi. i wasn't worried about how he would handle it (he is really easy-going) but i was more concerned about the hassle of security and transporting medicines and adaptive equipment and how we would handle the tight (maneuvering) space on the airplane.
We were fortunate to have a wonderful experience with jetblue airlines, starting from the patient customer service rep, who spent 1.5 hours on the phone with me, picking out the best flight times for us and explaining all of the handicapped accommodations that they offer.
with 6 carry on bags PLUS the car seat and stroller (and 2 checked bags) we were quite a sight. it took quite some time to unpack loads of medical liquids and get all of our stuff through the xray machine. TSA has a wonderful feature where you can request extra assistance for the handicapped. we had a TSA agent accompany us through the screening process, and all of the agents were extremely patient, and sensitive to Yossi's needs. There was also silent boarding at the gate and really pleasant flight crew. they even made sure we were settled on the plane before inviting more passengers to board. i have never cared about what row i was seated in , but handicapped seating (the first row) makes so much of a difference: more room to lift yossi in and out, not having to shlepp him down the narrow isles, and not having to worry about him kicking the seat of the passenger in front of us. all of these little things make such a difference as yossi gets older. it could not have gone any smoother and i cannot wait to fly again! i'll definitely use jetblue!
our trip to florida was quite short but the freedom of moving around without a coat was invigorating, as was the sunshine and the pool (yossi's favorite). we got to visit with many relatives from dov's side: grandma and pop-pop helfner, grandma and grandpa zeichner, aunt marsha and uncle phil, cousin dianne, great aunt rose, and most importantly great-grandma sally, dov's beloved grandmother may she live and be well until 120! we also got to visit with our favorite auntie shayna, uncle ari and cousins adam, and shoshana laya. yossi was completely smitten by his little cousin and the two kept holding hands. there is something incredible about kids who have little/no vocab (shoshana laya is 18 months) they are completely intuitive and in tune with each other!
Highlights for yossi included the pool, and pop-pop's new dog-doggie dylan who was very patient with all of Yossi's petting and hugs.
2. NEW YORK
our flight home was delayed several hours and we were greeted late thursday night in new york by extreme wind and frigid temperatures. friday was a whirlwind of unpacking, laundry, cooking for shabbos. sunday morning i was right back at work, and sunday afternoon i was packing again, this time for Boston.
3. BOSTON
the long awaited but not so publicized trip to Massachusetts general hospital, had finally arrived. Dov had to work so i spent the week with yossi mostly on my own. im lucky to have good friends though, maddy (who incidentally studies in boston) to split the drive with me, and leora who managed to have time to bring me meals even though she is busy shuttling to her preemie in another hospital.
our trip was to consist of a 48 hour admission to start yossi on the ketogenic diet for seizure control. now that he is off of prednisone, it was safe to try the diet. even though his seizures are currently under control, he is on alot of medicines and it would be healthier for him to reduce some. also his current seizure control has been achieved through valium, which usually only last for a handful of months, so its important to find a more permanent solution. ketogenic diet is commonly used, and has been very successful in kids with angelmans. the ketogenic diet deprives the body of carbs and sugar and induces a state of ketosis, in which the body burns fat for energy.
well, man plans and g-d laughs:He laughs at me alot! first i had to juggle some problems with the admission paperwork all while making calls to the phamacies and doctors back home to make sure that the special keto formula and the specially mixed medicines would be approoved by insurance and delivered to my house by the time i arrived home.
i was also not prepared for alot of the intricacies of the diet and i wish the dietitian would have prepared me with a step by step rundown of what to expect in the hospital.
well, Yossi hardly had time to take advantage of the wonderful non medical patient services before he got very sick. it is common for this diet to be a shock to the system which is why it is started in the hospital, but patients usually stabilize within the 48 period as there bodies adjust. however, my sensitive little boy became dangerously acidotic and hypoglycemic, which is highly unusual. he first began vomiting constantly and then became extremely lethargic and couldnt move or open his eyes. even an iv with bicarbinate (to combat the acidocis) didnt help him recover his levels in the slightest. it was extremely frightening to see a seemingly straightforward diet go wrong. each day our stay was extended and each day dov postponed his bus ticket until the decision was made on thursday night to stop the diet and put yossi back on his old formula overnight and re-evaluate the next day. by friday morning yossi was feeling better and the hospital decided to discharge us. dov had made it up to boston on thursday, so friday morning we packed up in a hurry and rushed back to new york (had no way to get medicine filled in boston, so we had to make it back home in time for shabbos)
4. HOME AT LAST
with G-D's help we arrived home just one hour before shabbos and raced to unload the car and straighten up the house. we are truly blessed to have amazing friends who prepared shabbos food for us. Yossi is completely back to himself and cannot stop smiling now that he is back home in his familiar surroundings and feeling wonderful. soon its back to the drawing board to follow up on some suggestions and find a new plan to help Yossi's seizures continue to stay under control. for now, its back to the stress of daily living.. we're just grateful to be under our own roof.
Monday, February 2, 2015
dreaming
overtired mamma. makes hands ten times colder than usual.
overtired mamma changes diaper of little boy sleeping deeply.
little boy stays asleep but twists and makes faces when mamma changes him.
i wonder what he is dreaming of when my cold hands touch his skin.
i guess i'll never know.
overtired mamma changes diaper of little boy sleeping deeply.
little boy stays asleep but twists and makes faces when mamma changes him.
i wonder what he is dreaming of when my cold hands touch his skin.
i guess i'll never know.
Monday, January 26, 2015
prednisone, a goodbye party
Goodbye Prednisone Goodbye.
Goobye 5, 10, and 20 (mg tablets)
Goodbye pill cutter and powdery mess
Medicines to take- one less
Goodbye hyper-vigilance
Goodbye multiple hospital visits
Goodbye sensitive immune system
Goodbye broken bones- we wont miss them
Goodbye rapid changes
less worries in public places
Goobye sleepy boy and worried faces
Goodbye backward jumps and baby steps
Goobye rigid schedules and endless stress
Hello strong body
Hello fun
Hello health
Hello sun
Hello to dreams come true
Hello to a healthier you
Goobye 5, 10, and 20 (mg tablets)
Goodbye pill cutter and powdery mess
Medicines to take- one less
Goodbye hyper-vigilance
Goodbye multiple hospital visits
Goodbye sensitive immune system
Goodbye broken bones- we wont miss them
Goodbye rapid changes
less worries in public places
Goobye sleepy boy and worried faces
Goodbye backward jumps and baby steps
Goobye rigid schedules and endless stress
Hello strong body
Hello fun
Hello health
Hello sun
Hello to dreams come true
Hello to a healthier you
Wednesday, January 21, 2015
The Hand of Hashem
Yossi woke up early today (well 7 a.m. is early for him) and got to school at a decent time.
When i pulled up at the school building there was a parking space right in front.
Then i went to the gas station- got a full tank for $35.00 (happy dance!)
Since it was so early i stopped at 770 to daven - incidentally its Rosh Chodesh too!
Its so great to recognize the small things that Hashem does for us!
Its so nice to daven with a heart full of gratitude.
Freshly inspired by the mornings events
Asking for the rest of the day to be just as incredible in a revealed way.
When i pulled up at the school building there was a parking space right in front.
Then i went to the gas station- got a full tank for $35.00 (happy dance!)
Since it was so early i stopped at 770 to daven - incidentally its Rosh Chodesh too!
Its so great to recognize the small things that Hashem does for us!
Its so nice to daven with a heart full of gratitude.
Freshly inspired by the mornings events
Asking for the rest of the day to be just as incredible in a revealed way.
Tuesday, January 20, 2015
just a regular kid
We always try to treat Yossi like a regular kid. We try to live as normal of a life as possible. Well last week i got my wish- Yossi was home sick for multiple days with strep and a bacterial infection. oh the irony of it: dealing with seizures and medications and complicated issues on a daily basis and being completely at a loss when it comes to a minor illness! the joy (insert eye roll here) of having your child home sick AFTER a 2 week school holiday, and trying to work with a bored child at your feet. i'll take strep over seizures any day but boy am i glad he is back in school!!
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