 |
| unBEARably cute!! |
Tuesday, August 19, 2014
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!
Hope
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
Saturday, August 16, 2014
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)
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)
Saturday, August 9, 2014
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!
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!
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!
Monday, August 4, 2014
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?
'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?
Sunday, August 3, 2014
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.
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.
Friday, August 1, 2014
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 :)
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 :)
Subscribe to:
Posts (Atom)