****A week ago today*** Just as soon as I thought things would be slowing down a bit, life has been busier than ever. After a non-stop week of Perkins, respite, VNA, and therapies, we packed up the car Friday and headed down to Connecticut for Uncle Pat’s wedding!! The wedding was just perfect and everyone… Continue reading The wedding!
There has been this leuming finality to every day since taking Kai off chemo. Like with every day that passes and every decision I make I am loosing something close to me. Loosing a part of me. His life is in my hands and mine in his, and it is a scary place to be.… Continue reading Worth the Trip
****This post was written last week a few days after starting Kai’s new pain meds. It was a ruff week and he was sleeping a lot and barely eating which all made us feel the end was near. It was a long hard week and I guess I forgot to post this writing so I… Continue reading Sleep -last week
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
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 