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
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
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
****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
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
Last year when Kai got his feeding tube it came with a little black backpack. Many kids who are mobile and who have continuous feeds throughout the day wear there feeding pump in this backpack. We used our backpack to hang the pump from the stroller most of the time. After a few months our… Continue reading Feeding Pump Backpack Conversion
We have been trying anything and everything to get Kai to be ale to play, interact and do therapy. And while we do get some help from different organizations, we would not be able to provide Kai with these tools, toys and resources if it weren’t for all of the generous donations made Kai’s Fight… Continue reading Favorite Things
****this is last weeks post 6/21 that never got posted. Today I am feeling a little better about some things…****** Last week was an off chemo week, so we had high hopes for lots of fun and getting some things done. After his last chemo session Kai was not feeling well and ended up with… Continue reading feeling a bit discouraged
A few Day’s late, but in honor of Fathers Day I thought this was a great post to share about being the father of a special needs kid. I think all parents feel these things but it is interesting hearing it from a dads perspective. How Dads are Impacted When Kids Have Disabilities. The impact… Continue reading How Dads are Impacted When Kids Have Disabilities
It was chemo week again, and this week we were the last patient out the door at 6:15pm. What a LONG day! Kai was due for his monthly antibiotic treatment and he now receives 3 pre-medicaitns before chemo, all of this took about 3 hours before even starting his normal 3 hours of chemo! We… Continue reading Oh what a week
Keikikai 