I was afraid that once we came to the sleep study Kai would ‘sleep like a baby’ but no worries, he did not disapoint. He hated being hooked up to all the wires, kicked and screamed the whole time. Once the set up was done it took a while for me to get him to… Continue reading Sleep study
We are still here at Childrens, getting chemo tonight, trying to figure out the feeding tube and talking to the sleep specialists. They are doing some GI testing tomorrow in preparation for his permanent feeding tube and then we can go home! I really hate watching him get chemo. As soon as they start giving… Continue reading Chemo week 4
And again we are back inpatient at Childrens. Kai has still not been feeling well and continues to loose weight. He still has some inflammation in his ventricles but this MRI did look better. We have been avoiding the feeding tube for a while now. Each week i work so hard trying to feed him… Continue reading Feeding Tube
After only two weeks of chemo Kai was readmitted back into Childrens hospital. He was still having his usual symptoms of fussiness, poor appetite and restlessness, all things that could now be blamed on chemo bu i still felt like something else was going on. Kai blood eork also came back that he was… Continue reading Chemo, complications and A few new friends!
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
Keikikai 