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
Last week I had the opportunity to attend the Massachusetts Early Intervention Consortium. http://www.maeic.net/index.html I was invited by our local EI and Regional Consultation Program, who funded the two day conference, meals and hotel stay. It was another great learning experience, the best of which was spending a few days with some amazing super moms… Continue reading Early Intervention conference
Kai still slept a lot today but e was defiantly feeling better! He barely needed any meds and ate and drank pretty well. He even had enough energy to try to tackle the spoon himself! Thank you for all your thoughts and messages, we really appreciate it xoxo
Well I’v said it before and I’m sure I’ll say it again, I hate chemo! I hate that I know so much about it, I hate that so many other people have to knows so much about it. I hate having to pick which one my baby should get and I really hate watching him… Continue reading Day one, again
We have been to Perkins School for the Blind a few times now but only for Ophthalmology appointments. The first time we went I was stunned at the size and beauty of the campus, but we are usually there after school hours and very few people are around. The place was still a bit of… Continue reading Perkins Early Connections Conference
So a decision has been made. Next week Kai will start on Avastin/Irinotecan. This protocol will be an IV infusion every two weeks at the clinic. It is disappointing to be starting all over again, but tonight I am relieved that the decision has been made. I went into today still not knowing which way… Continue reading Avastin/Irinotecan
We are off to the clinic in the morning to Talk about what to do next with Kai. I was given 4 protocols to decide from and I still have not made a concrete decision…. How can they expect me to make a decision like this anyway? I am not an oncologist or a doctor… Continue reading Pick your poison
So it official Kai has failed off of his first chemo protocol. It’s been a few weeks in the making, and not a total shock, however no less disappointing. Over the past few days Kai had a series of vision tests, at Perkins and Children’s, and just as suspected his vision has worsened. His visual… Continue reading It’s official
This weeks clinic visit was a bit different for us. My mom was working, our nurse practitioner was on vacation and we had to be there extra early ( not that that’s anything new) for Kai’s first swallow study. Thankfully our good friend Molly came to spend the day with us and the time just… Continue reading A healthy dose of Reality
Kai hunting for eggs with the cousins down the cape.
Keikikai 