It has been an amazingly full weekend of visitors loving on Kai. Everyday I am in awe of just how many people his little life has touched. I am in awe of the generosity, dedication, compassion, and love our village has shown us. Everyday I am just in awe. It has sometimes felt like a… Continue reading Weekend review
After a completely exhausting day I find myself laying here at 10 after midnight wide awake or maybe just to numb to sleep. Its hard to even remember where we were this morning, or yesterday or last week. So much has happened since then. I no longer know what day it is or how long… Continue reading Friday
It’s 5:30am Friday morning and I know everyone will be waking up soon looking for an update on Kai. I know you all are praying for him and thinking of him and telling your friends about him so they can do the same, he needs it now more than ever. Yesterday he had an MRI… Continue reading Thursday
After all the tests Kai went through the past few days we all thought he’d get a break today. But the tests continued. Nothing has really shown up on his EEG or EKG and they are still monitoring both. His heart rate still has periods of begin irregular but they are a little less concerned… Continue reading Wednesday update
Kai is still in the ICU but woke up much brighter this morning. His eyes were wide awake and he was comfortable and content…. Until I left to brush my teeth. Apparently he had some shaking episodes that the nurse witness and she was concerned that it looked like seizure activity. More tests! They came… Continue reading Tuesday update
***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
Today was supposed to be a big day for us. First, Founders day at Perkins, an assembly put on by the students that I was really looking forward to, and then we were due in clinic to discuss treatment options. I have been pretty anxious about this appointment as I am starting to feel like… Continue reading Today WAS the day
I can not believe the difference in Kai between yesterday and today. Even his VNA who was here both days was in complete amazement when she saw him today. Yesterday he was still having a hard. He was sleepy but couldn’t sleep, whiny but not in great pain. He was pail and his heart rate… Continue reading It’s a new day
I am so thankful we made it through the frankenstorm nearly untouched. We lost power for a few hours but didn’t loose any food or meds! It has been overwhelming to see the devastation in our neighboring states. I can’t stop thinking of our friends in PA and NJ and NY. I really don’t know… Continue reading I can see clearly now the rain is gone..
I tried to be patient waiting to hear from Pittsburgh about the trial for Kai, but by Wednesday I was pretty restless. I started going a little nutty emailing our NP rambling emails about the different treatments and how Kai is doing and how I still don’t know what to do. A few minutes after… Continue reading Just looking
Keikikai 