Arrived 8:40- did some intake information. Began first of 3 base lines feeds. I was in a room with Leo in a high chair. Video camera started. Timer set for 10 minutes. 2 therapists in adjoining room watching through one way mirror. First plate of food- yogurt and peaches with cup of water. We did pretty good. No problem -- Leo played with the food while I attempted to feed for 10 minutes. 10 minute break given. Back in chair. This time we have peaches and butter scotch pudding. By now Leo was exhausted and done. (Apparently getting up at 5:00 AM caught up with him) It was a long 10 minutes of Leo fighting me and throwing food. Break time and Leo decided it was nap time. He slept for about an hour. Next meal was scrambled eggs, tiny, tiny pieces of cheese, and applesauce. We did much better this time.
We walked back to Ronald McDonald house for lunch for 30 minutes. Too short of a break for both of us.
Now it was time for the therapists to take over. I would watch and they would attempt to get him to swallow. A random coin was flipped to see which was first- formula on a spoon vs. pears on a nook brush. Again 10 minutes on, 10 minute break. Spoon, nook, flip coin next time nook then spoon. Collecting data. Leo did great for the most part. seven 10 minute sessions, with a 10 minute break in between. They keep data during each feed and if you know Leo you will not be surprised to know by the end he had his own paper and pen to keep data with. Before and after each attempt they would weigh his bib, rag, and bowl of food to see how much he took in. I think the most was 8 cc's. That is a tiny amount. Before each attempt they let Leo push the button on the timer to start the 10 minutes. Leo also pushes the button to stop the timer when it buzzes at the end. Feeding time can not end before the buzzer goes off. The last time was the longest 10 minutes of my life.
the small room we get to hang out in between feeds
By the 10th time in the feeding chair, we both were done. Leo cried through most of the feed. He did get 1 or 2 swallows. We ended our day at about 4:15 with both of us crying. We came back to the Ronald McDonald House and enjoyed the play room.
For now we have gotten rid of one of his morning feeds and will decrease others as his intake increases. Leo was weighed today and will be weighed again on Friday.
Dinner is done, bath given and now it is time for bed for both of us. Leo just fell asleep and I am headed that way soon. I am wiped and homesick. Not a good combination.
Please pray we both sleep well tonight and that Leo actually sleeps in till 7:00 or later! (ok- at least till 6:00). Pray Leo continues to do well and that the swallow instinct kicks in and that he starts automatically swallowing.