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
Kai and I had school at Perkins again today. It was a small group this week only four of us moms but one I hadn’t met before. We had a great talk and the kids had a special guest, Nova a guide dog! Kai’s teacher told me that Kai and Nova had a special bond,… Continue reading The Special Needs Mommy Manifesto
Thanks to my cousin Anna, Grafton Middle School donated the money from this years ‘penny wars’ fundraiser to Tubie Friends! A few months ago Anna put together a power point presentation about Tubie Friends and Kai and showed it to her classmates. They collected over $250 in pennies! This week I went to the school… Continue reading See a Pennie Pick it up, and all day you’ll have good luck
A few weeks ago Kai was accepted into the Infant Toddler program at The Perkins School for the Blind. As we all know Perkins does amazing things and we are so thankful they had a spot for us. Yesterday was our first day at class! Of course it was wonderful. There were 6 families there… Continue reading Perkins infant toddler group
People are always amazed at how much Kai looks at them eventhough he is ‘legally blind’. I get asked all the time what I think he CAN see, and while i don’t really know the answer I though it may help to share a few facts about blindess and Kai’s vision. What does it really mean… Continue reading Legally blind. What does it really mean for Kai?
It’s hard to believe it has been a year since Kai was diagnosed. In some ways I feel like this year flew by but at other times I can take myself back to that day like it was yesterday. At this point it is hard to remember life before brain tumor and I now… Continue reading A year ago and a lifetime away
Keikikai 