Congratulations to first prize winner AMY! Enjoy the game today! And a congratulations for the runner up Sharon! I tried ALL week to figure out how to post the video of Kai pulling the winning raffle tickets… You can find the video here on youtube, but i was unsuccessful at getting it right… Continue reading And the winner is…
Ok more than a thousand, way more! Many of our family and friends have talked about doing a fundraiser for Kai over the past year. At first I resisted. We were doing ok and I’v NEVER been good at asking for help. Asking to help other people sure, but not me. People have been helping… Continue reading A thousand thanks!
Yesterday while Kai was at the respite center I did not unpack our camp bags or do laundry or grocery shopping, i didnt spend extra time with the dog, or even take a minuet to relax myself, instead I spent my time researching clinical trials. I printed out studies, I read message boards and peoples… Continue reading Clinic conversation
Our time at camp was amazing. The support they provide is invaluable and I feel so fortunate to be able to revisit this amazing place with these amazing people. But now we are back home and we’r jumping right back into the busy week ahead I just sat down and read my ‘letters from camp’… Continue reading Home again
***Over the weekend Kai and I are back at Camp Sunshine and this time we brought Gigi (my mom)! She has been there to witness most of the awful things Kai has had to endure over the past 16 months I really wanted her to experience some of the good stuff too. Camp is one… Continue reading Camp 2.0
The past few days have been tough on me. Kai is feeling better since we are treating his ear infection, but not as good as I had hoped. I’v been spending my days researching these stupid tumors again. Looking for treatments. Hoping that I can find something that I can convince myself might help him.… Continue reading Getting hard to do nothing
We had a good little stretch there. The week leading up to the wedding Kai was doing very well. He was on minimal meds and he had been doing great with all of his activities. I was really settling into the possibility that we would have many more of these content, stable days to share.… Continue reading ‘typical’ kid stuff
Last night I started writting about our busy weekend at my brothers wedding. We had a wonderful time and I will post that story later, but right now mind is consumed with other things. I found out this morning that a little girl we know from clinic, Avalanna, lost her battle with cancer yesterday. She… Continue reading Kids get cancer too
****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!
Kai had been doing well for a few days. I have been able to back off of some of his pain meds (oxycodone) and eventually started pooping on his own (without the use of a suppository)! He has been tolerating a bit of food each day and has been awake and alert most of the… Continue reading A little fun
Keikikai 