Kai went into MRI yesterday around 3:30 everyone was excited that we were getting in ‘early’ since our slot wasn’t until 5:30. They must have forgotten that we also waited all day yesterday…thing seems to move a lot faster down there on a friday…just saying Anyway they got us in early. He did ok. Because… Continue reading MRI ‘stable’
MRI never happened yesterday. He fasted all day for nothing. After we knew MRI wasn’t going to happen I was able to feed him some and he actually ate pretty well. He had some Mac & cheese and chocolate pudding with peanut butter ( his new favorite way to eat his PB!) He probably ate… Continue reading We’ll be here all weekend
I went into chemo last week feeling pretty uneasy. Kai’s head control and muscle tone has continued to worsen. Because of all our concern we decided to meet with physical therapy at children’s again to see if there is anything else we can be doing to help him get stronger. She saw him a few… Continue reading MRI July 5th
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 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
An MRI was ultimately done to get a better look and make a plan for placing the shunt. Pediatric MRI are done with sedation in order to keep the baby still. It was so scary to send our little baby to be put under. As Mark and I waited we tried to focus on the… Continue reading Hypothalamic Optic Glioma
Keikikai 