Early Morning
Kai woke up around 2 or 3 most mornings at camp. One morning we took a walk as the sun was coming up and took a few pics around camp.
Letters from camp: day 5
Today is the last day of camp. We leave in the morning right after breakfast. It has been an amazing week and I will definitely be sad to go, but so thankful for all I have learned while I was here. This morning we had the opportunity to meet with a research doctor, Dr. Stiles,… Continue reading Letters from camp: day 5
Letters from camp: day 4
Kai is finally feeling more like himself today. I just picked him up from the nursery and his volunteer told me she even got a little laugh out of him! He’s sill having a pretty ruff time overall so even a few smiles a day is a huge improvement from a few days ago. Between… Continue reading Letters from camp: day 4
Letters from camp: day 3
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
Letters from camp: day 2
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
Letters from camp day 1
Despite some major setbacks yesterday ( a medication mixup that landed us in the ER for half the night) we managed to make our way up to camp on time today. And I use the term camp loosely! We were greeted at the door by probably 20 volunteers. Before I knew it 5 kids came… Continue reading Letters from camp day 1
MRI results
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
Cape Cod 2012
A few pics from this years Cape Vacation. Last years Cape vacation Kai was inpatient at Childrens hospital getting his g-tube placed. We Made it out for one day but then returned to the hospital the next day because his tube was infected. This year we were able to spend almost the entire week down the… Continue reading Cape Cod 2012
Reality TV
****wrote this post Wednesday night of last week, before going in to discuss Kai’s MRI results. Thought it was still worth sharing. I promised myself I was going to go to bed early tonight. We have not been getting much sleep around here the past few week and we have a big day at the… Continue reading Reality TV
MRI July 5th
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 