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.
