***monday Today was totally nonstop! We went from doing fairly well this morning to being rushed into a string of tests and procedures and surgery the rest of the day. After Kai’s morning meds his blood pressure began to drop. I wasn’t too worried about this as he is on some pretty heavy pain meds… Continue reading Tests, tests and more tests
Kai had been doing well for a few days. I have been able to back off of some of his pain meds (oxycodone) and eventually started pooping on his own (without the use of a suppository)! He has been tolerating a bit of food each day and has been awake and alert most of the… Continue reading A little fun
Having chemo every other week really feels like we have some time to live a little bit of a normal life. …but since we still spent 4 days at children’s hospital in the past two weeks I don’t think our definition of normal life is very normal…. What makes the greatest difference is that Kai… Continue reading EEG
They past few weeks have just been jam packed full of appointments and meetings. We spent three days in Boston last week and our usual Wednesday visit this week, and we are really no closer to knowing what to do with Kai’s chemo. Last week: Tuesday– we met with ORL to check on Kai’s breathing… Continue reading Leave no stone unturned
Kai has had a great few weeks off of chemo so far. The weather has been getting nice. We have been going for walks and meting with friends. A few days ago he started getting stuffy again and has been very sleepy too. I am not sure if it is another cold or allergies??? Either… Continue reading Playdate Pics
Last week was Kai’s 30th chemo treatment, marking the half way point of his protocol. 30 down, 30 more to go. It is hard to believe that we have been doing this for 8 months! I stopped keeping track a while ago and this half way mark kind of snuck up on me. I dont… Continue reading 30 weeks down. 30 more to go…
Kai did surprisingly well after his treatment last week. His cold cleared up and no vomiting this week! He is still pretty sleepy and has started tugging at his ear again, but hopefully it is just the teething. A BUNCH more teeth are coming in! Since he was feeling well we were able to keep… Continue reading Old friends and new devices
Getting ready for week three of this cycle and I have to say I am really dreading it. Kai and I had such a nice day today. We had three of our favorite appointments, OT with Paula this morning, a visit with Jen the volunteer and then an appointment with Jacqueline for acupuncture. Kai played… Continue reading Dreading week 3
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
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
Keikikai 