a day of crazy

waking up with children in middle of the night is never a fun thing. it reminds you that your day probably wont go according to plan either (the broken or shortened sleep certainly doesnt help any)

here's how today jam packed day  went down:

 2:30 am
yossi: "mom mom"
me: "go back to sleep its the middle of the night"
yossi: "hysterical laughter
me: "its not funny"
yossi "yes it is" followed by more laughter! (yes he actually said those words)


 7:45 am
wake up yossi for a 10:00am fitting for his leg braces.
discover that the feeding tube came out of yossi's stomach.
apparently the tube came out some time during the night, probably several hours earlier, because the hole had already started to close and i couldn't get it back in. Que a trip to the ER and canceling the first appointment of the day. I nearly panicked thinking of the worst case scenario but not to worry, Gd has everything under control as usual.  G-d sent us a parking spot right outside the ER, an empty waiting room and super sweet and knowledgeable doctors. Thank G-d they were able to reinsert the tube and taught us a few tricks to keep in our back pockets.


10:15 am
leave the ER and drive hubby to work and then head up to the Bronx for a neurology appointment and a different hospital. chat with about half of the hospital staff since we are there so often we know everyone from the doctors, nurses and secretaries to the housekeeping staff and the security guards.. we got good news today, yossi is doing so well that we can start to wean him off of another seizure medicine. its the 3rd one we are working on this year. I would never have thought yossi would come so far in one year. we are so so fortunate that G-d has given him good health and that our doctors share our joy. they are so proud of Yossi's progress and so filled with wonderment to see the change in his strength and his stamina.  we arent out of the woods yet. yossi's is still recovering from the damage that the steroids have done to his immune system.  please pray for his continued recovery and for success in weaning him off of more medications and for G-d to guide the doctors.


2:00 pm time for another long drive home in bad weather (tired mama must get off the road) and an impromptu  play date. if only the ground was dry so we could sit outside and enjoy the warm weather.  playing indoors with friends is good too!


5:00 pm mommy needs socialization too! we were joined by a friend for homemade dinner  (yes i actually manage to cook once in a while) and a relaxing evening at home (read: converse with your guest while she trails you around the house as you prepare medicine, give medicine, take care of yossi and clean up the hurricane that you left in your wake after the morning rush to the ER)

8:00 pm bed time for yossi. finally a chance to sit down and relax. or fall asleep over the computer before its time to plug in the feeding tube for the night :)
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