After DAYS of Kai feeling pretty miserable, he seems to be almost back to himself this morning….of course tomorrow we are back for chemo Kai developed a pretty nasty cold after last weeks treatment. There were a few nights of continious hacking all night long and he spent most of each day sleeping. He wouldn’t… Continue reading Feeling better…just in time
A while back Kai’s visual aid, Linda, measured him for an activity table. It is a service offered by the Perkins school to kids with vision loss. Linda came by yesterday and dropped it off for us! It is so beautiful and Kai absolutely loves it! The volunteers at Perkins make them specific for each… Continue reading Activity table and chair
Kai’s Fight Club hoddies are in! Quantities are limited, so get yours soon. They are a nice soft mocha brown with a golden print, representing childhood cancer. They are men’s size and run a bit big, I wear a small which fits just right, comfy cozy! In stock: 2 small sold out! 2 medium 4… Continue reading Hoodies are in!
Kai and i spent a few days in Boston again this week. Tuesday was our first appointment at Perkins School for the blind and of course wednesday was chemo. We spent tuesday night at Ashley and Joes (thanks for always being there for us!) so we didnt have to drive in and out twice. Our… Continue reading Perkins School
Loving Kai: a collection of photographs of Kai’s life pre-diagnosis
Opthomology went well. They said his vission is still stable, ‘no significant chamge’ my favorite statement….For one of the tests they cover one eye at a time to see how each eye does on it’s own. Kai was definatly very upset when his left eye was covered. We already know his right eye has less… Continue reading Day 5/ chemo
Kai’s surgery went great. His long yellow tube is gone and a new little button is in it’s place. With just the little button left his body looks even longer and bigger! We were in and out pretty quick, home by 2:30. We spent the rest of the day snuggeling and napping on the couch!… Continue reading Awareness day 4/ post-op
Day 3 of feeding tube awareness week and we are sitting here in pre-op getting ready to switch Kai’s peg-tube to the mic-key button! It is so hard to believe but it’s been 6 months since Kai first got his feeding tube. We have learned so much and he is now consistently growing at an… Continue reading Day 3- understanding life with a feeding tube
Topic: Why does your child have the tube they have now- a highlight of the medical conditions that require tube feeding. Kai was a great eater for the first 8 months of his life. In fact he e nursed constantly and loved solids just as much. He gained weight rapidly right from birth. At 8… Continue reading Feeding tube awareness day 2
Today marks Day 1 of the second annual Feeding Tube Awareness Week, put on by http://www.feedintubeawareness.org The goal of Feeding Tube Awareness Week it to spread awareness and educate. Each day a new topic will be discussed. As you all know Kai was placed with a feeding tube in August 2011 after three months of… Continue reading Feeding Tube Awareness Week- day1
Keikikai 