While I keep telling Kai that it is ok to let go, to relax and that he doesn’t have to fight anymore I am so thankful for another day together. Holding him close.

Well I managed to get out of bed today. The hospital was quiet but it wasn’t as weird as I thought to be here on thanksgiving. It was kind of special in a way, walking the halls smiling in at other families, feeling with just one glance that we are somehow all in this together.… Continue reading Next year will be different

Kai’s breathing has been labored overnight. Every time I wake up it sounds like more of a struggle. His nurse just came in and told me his heart rate is still good but the last time he checked his respiratory rate was 16 breaths in a minute. He is breathing more from his belly. You… Continue reading Quiet morning hours

This morning Kai had some nice alert awake time and started throwing us all for a loop again. His breathing was even he was looking around. As our visitors rolled in everyone was kind of shocked that he was looking so good. Shocker, Kai has fooled us again!! While we were all happy to have… Continue reading Seizure

Kai and I are all tucked in and ready for bed tonight. He had another sleepy day today. He has barely been awake a few hours total. He is so tired he just can’t keep his eyes open. His breathing is also changing. Yesterday I noticed a few gasps, and then again his morning. By… Continue reading Bed time

We have been so fortunate to have such a wonderful network of family and friends supporting us since Kai’s diagnosis. Many of you have been here from the beginning and many of you we have met along the way. But you have ALL become a part of our village and we would not have been… Continue reading Kai’s Village

After two days I have finally fully cooled off about the scan. I am happy we talked about it and I know if I really needed it I would push harder and it would happen. But a few days out I feel better about not needing it. Kai is telling us what we need to… Continue reading One last time

The doctors just rounded and allthough we are all curious they have decided that is not a good enough reason to put Kai through the scan…. Yesterday I was so conflicted about even doing the scan, for the same reasons the doctors talked about today. What will the results show us? It won’t change our… Continue reading No Scan

Not much has changed in the past few days. Kai still seems pretty stable. The new pain med plan is still working. He is sleeping well, snuggling and spending some time each day alert and awake. His wounds are healing. His hair is growing. He is peeing and pooping and maybe even let out a… Continue reading What now???

I haven’t had the time or energy to post the past few days although every day I try. I try to find a quiet corner of the hospital to sit and drink a coffee and write, but it hasn’t been happening. I actually hate when a few days go by without writing because I feel… Continue reading Sweet tooth