Yesterday was Kai’s official birthday. My little baby boy is 2! It’s hard to believe he has only been in my life for two years. I can hardly remember life before him and I just can’t imagine my life without him. All week I have been thinking back to the day of Kai’s birth, and… Continue reading Turning 2, a look back
I know you all ave been waiting for an update on Kai. The truth is he is not doing well. After leaving the hospital last week he has had a pretty ruff time. We were only out one day but it felt like forever because he was so miserable. I was so worried about him,… Continue reading Post hospital update
Kai had another good night. He was awake a lot but he was pretty content. He did not have any pain meds and he tolerated the feeds and his chemo well. This morning the team came by and said the plan is to get us out of here tomorrow! We will continue to bump up… Continue reading Morning Rounds
(sunday) Kai had a decent day yesterday. He spent the afternoon with his Gigi and he was feeling pretty good. He had a long stretch from 2pm-3am with no pain meds. He tolerated his tube feed all day and all night and everyone was hopeful that we were heading in the right direction. The on… Continue reading Day 4 inpatient
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
By far the best part of today was the camp talent show! I had to fight the tears the whole show and it wasn’t even my kid up there on stage. The stage is such a vulnerable place to be and to watch these kids stand up there and put forth their talents and interests… Continue reading Letters from camp: day 3
Kai was so excited for his first full day of camp that he decided to wake up at 2:45 this morning He has been on steroids since Thursday and I think he was feeling the full effects by this morning. Thankfully after a few other meds to help take the edge off we were able… Continue reading Letters from camp: day 2
The results of last weeks MRI were not what we were hoping for. After the team compared this MRI with one Kai had in December, they agreed the tumor is growing. This tumor is expanding in the mid brain/ brain stem area, which coincides with his current symptoms of lack of head control, muscle tone… Continue reading MRI results
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
Keikikai 