so I used to think sleepless nights were bad, we have had lots of them (and I do not mean newborn happiness, I mean sleepless with a very sick child), last night defines what bad really is. Last night, Connor started choking on his own saliva, we were up until 2 with his labored breathing then finally his coughing /choking attack that miraculously cleared it, we were not so lucky this afternoon when he just threw up when this started. Connor slept almost 20 hours, when he woke after our crazy night, last night we were scared we would never see his beautiful blue eyes again and feel blessed we did. He was more awake than we thought he would be, we brought him to peony’s envy, which Claire loved, I can’t wait to take her back when it is really pink in a week or so. I bought 6 roots, not nearly enough, for the garden we want to start near our new patio this year, it will grow in beauty each year Con is gone, somehow this seems important to me, to plant things this year, why not start with my favorite flower of all time, the one that filled my bouquet on my wedding day?!
We had a long talk with our hospice nurse today on the “plan” for the next time he chokes, we talked about eating, the pros and cons of it, at this point where Con is in this journey, basically ice cream is a go as it will satisfy him in more ways than just hunger, not much else unless he is really, really asking for food, at this point eating and digesting food could take energy away from him being alert with us (I feel like we are back in the NICU where drinking the bottle could use more calories than u get from the milk in the bottle) it is a hard pill to swallow, but all “part of the process”, but with the choking we need to be very careful.
Claire on the other hand seems overprotective of Con, when the owner of peony’s envy went to say hi to Con she moved in to create a barrier and hug him, I can not explain with words how brave she is and loving. She is also enjoying all her activities outside the house, today she had a special play date with Kristin’s son James (Kristin selfless as always knows how worried I am about Claire, how she needs other kids in her life so dropped what she was doing to meet Amanda at the park this am so they could play, James is now in Claire’s inner circle she has not stopped taking about him since!) and it looks like they had oh so much fun!
Claire also agreed to actually participate at soccer today knowing that she had a “treat” after, ice cream with Grammy and Poppy!