http://augustmiles.org/wp Mon, 26 Jul 2010 19:46:04 +0000 http://backend.userland.com/rss092 en This has been such an interesting and intense trip. I am sitting on a bed in the Mariott Hotel, south of Graz, near the airport. There's nothing around here. Desolate industrial park, next to a lake resort where people live/camp for the summer. There is an ... http://augustmiles.org/wp/?p=88 After getting our hopes up that August's button would be removed today...it's not. He is just not eating enough calories and his weight is still dropping. We will probably have to wait until we get back to Portland to take it out. I don't know what else ... http://augustmiles.org/wp/?p=87 Weight is still fluctuating a bit, but so far only lost a little bit since we've stopped the tube feeds on Friday. Still planning on removing the mic-key button tomorrow. If all goes well we will train it over to Salzburg for the weekend. Should be a ... http://augustmiles.org/wp/?p=86 DAy 5 Graz, July 9 weight=9.4 PT with Eva. Cranio-sacral work. Bottom half loose, all over the place. Top half tight and strong. http://augustmiles.org/wp/?p=85 LOGO with Christina, who suggested asking MDS for appointment with dietician for ways to add more calories to food he is eating/drinking. August needs to make eye contact when asking us for something--when he points and whines, wait for him to look at you before getting him what he wants. Vibrating massager ... http://augustmiles.org/wp/?p=84 Weight=9.55 kg Swimming this morning was great. Warm and happy. Porter loved it too. LOGO=speech therapy with Christina. Good session. August drank from his sippy cup and took juice through a syringe and Finger Feeder tip attached on end. Squirt into side of mouth. Play Picnic=great. Split ... http://augustmiles.org/wp/?p=81 PT with Eva. August needs to work on sitting in Z position to create hip opening and rotation. Support him and make sure he shifts weight to put hand down to move out of Z. Both sides. Do not help him to stand. Eating ideas: thick soup (add Duocal), ... http://augustmiles.org/wp/?p=78 Day 1 July 5th weight = 9.9 kg Met whole team today. Dr. Margurite Dunitz-Sheer leads the program. Plan to cut morning feed tomorrow, then go to OT and play picnic. Met other families, most speak English. Zhara's (20 month old girl from London) family is staying just across ... http://augustmiles.org/wp/?p=76 We arrived in Graz on Saturday, July 3rd. Such a long time to travel. We left our house in Portland at 5 AM Friday morning, flew to Washington, DC, then to Frankfurt. Frankfurt airport was so hot and didn't have very good signs. We couldn't find ... http://augustmiles.org/wp/?p=75 41 days from now it will be July 4th--the first day of August's tube weaning therapy.  Wow!  We have so much to do still, including raising more dollars to get us there.   A huge thank you to everyone who has donated so far--all contributions are being matched dollar-for-dollar.  Our ... http://augustmiles.org/wp/?p=69