So we did make it to Dana-Farber to talk about Kai’s treatment plan. He will be receiving chemotherapy, out patient at the Jimmy Fund Clinic, once a week for 60 weeks. The first 10 weeks he will go straight threw and after that he will have 3 weeks on, one week off. Because it is… Continue reading Our New Normal
We have been in this hospital 16 of the past 21 days. Wow I really hope we get out today! Tuesday his neurosurgeon agreed to adjust his shut level again and it seems to be helping. He has been eating since then and no longer vomiting. I have been keeping a food log so… Continue reading Home Away from Home
So i think I’ve dealt with things up to this point pretty well, but tonight is really testing me. Kai just will not eat. They are not coming up with much reason why or a really good plan on how to deal with it yet. I feel like we’re never going to get out of… Continue reading Restless nights
Well our life outside the hospital didn’t last long. We’ve been back twice since our first discharge and it doesn’t look like we’re getting out anytime soon. We noticed a few things since we left the hospital that were worrying me but by Tuesday afternoon there was no denying that he was uncomfortable. He was… Continue reading And we’re back…
Kai’s surgery went well. He was pretty nauseous for several days, but recovered well. We finally got to go home after 6 days in the hospital and he is like a new baby! The change is amazing! His face just lights up. He smiles and coos and is moving all around! It really does… Continue reading Post-op. Life outside the Hospital
An MRI was ultimately done to get a better look and make a plan for placing the shunt. Pediatric MRI are done with sedation in order to keep the baby still. It was so scary to send our little baby to be put under. As Mark and I waited we tried to focus on the… Continue reading Hypothalamic Optic Glioma
We saw the most amazing Neurologist at umass and after talking with us and reading through Kai’s history she agreed that waiting another month was not a good idea. The team at Umass decided that the quickest, easiest, least risky option was to do an ultrasound. Because he is still a baby and his head… Continue reading Neurologist- Round 2
Nine months ago today my baby boy was born! People say it goes by so fast and it does… but for us, WOW, what a long nine months it has been. This may be my longest post ever but I guess I should start at the beginning: September 5, 2010 2:59 am 8 lbs 11oz. 22… Continue reading The First 9 Months
Keikikai 