First I’ll do a quick recap of day two feeding program and the progress Nathan has made.
Meal 1 consisted of a strawberry yogurt smoothie. It was presented the same way as the previous day. A certain number of “bites” were offered. He was given the opportunity to feed himself first prompted by “take your bite” and then 5 seconds later she presented spoonful in front of mouth and said “open”. He turned his head to the side for the entire feeding, sometimes smiling in a smart way, seemingly looking right through the glass at me.
Meal 2, the rules changed. We continued with the same yogurt berry smoothie but the plan was non removal. She explained the new rules and then held the spoon in front of his mouth, said “open” and then continued to hold the spoon there until he opened his mouth, even if only slightly. He did NOT like this at all.
By meal 4 he was reluctantly taking spoonfuls of yogurt smoothie in this manner. Toast bits were a complete vomiting failure and diced strawberries were somewhat successful.
We had a goals meeting and the ultimate goal is a variety of foods (4 from each food group) most likely in purée form.
Now let me address where I am getting ahead of myself.
I found out there was another CF child currently enrolled in the day treatment program while I was explaining my concerns on Day 1 about him being exposed to germs. The response was “it’s ok, we have another child with cystic fibrosis and we keep everything extremely clean”. I’m ok with this response because prior to Nathan I wouldn’t have known either.
The child is not present this week for some reason or another but I explained that our two children can not be near each other because of infection control.
Today, during the goals meeting I was told Nathan would be switching occupational therapists because the one we were assigned (I loved her) was also assigned to the other child. Also next week, when the other child presumably returns, Nathan will spend 3 days with me in the waiting room and 2 days in the playroom. The third week they will switch days again, and I’m guessing the 4th week as well.
I should really just be worrying about commuting in the snow tomorrow. But I can’t stop thinking about how I wish it could just be status quo participation in the day program. Not complicated by Cystic Fibrosis for once.
The glimmer of hope I had that perhaps I would drop Nathan off the days I was not needed next week and have my husband pick up on way home – smashed to pieces.
Now I have to be present to supervise Nathan (and Teagan) all day in the waiting room on the days Nathan cannot be in the playroom with the other CF child.
I can’t even really escape in between feeding sessions. Two extremely long days completed, 18 even longer days to go. I am praying that the change in plans does not adversely affect his progress in the program. I somewhat remember reading that parents would be separated from children in the morning and reunited at the end of the day. I don’t know if it is for a specific reason, like for kids who have separation anxiety which Nathan certainly does not have.
I guess I should really be praying that my mind and anxiety be relieved and that I try not to get ahead of myself.
Oh and Nathan sounds very nasally and congested tonight. ***One minute at a time, Christina, one minute at a time