Peter had a good week! Near the end of the week Michael joined us in KC (and will be here through next weekend) and Bear Pa surprised us by helping serve dinner at our Ronald McDonald House with a group. Michael has been his usual self–making friends with everyone he sees and spreading sunshine wherever he goes. We went to the playground near the hospital today and he played with a family of three older girls and their dad for over an hour. I got a bit burned–it’s been so long since I’ve been out in the sun, it’s like I’ve forgotten what to do!
This past Monday was a hard day for Peter due to withdrawal and we backed off on weaning meds. He hasn’t had any trouble since. Although he has had some excess mucus in his throat. It could be a cold. He is fine; the team is watching him closely. However, he is terrible at clearing his throat so often he has gagged on mucus and then thrown up. Since he did so well for the rest of the week on his meds, we started up the weaning process again yesterday. So far so good. He continues to be negative for antibodies, which is what we want. That means no rejection. Peter is over 16 pounds now and is finally on the growth chart! The dietician wants to go to bolus feeds as opposed to the current continuous feeds. That means he will get an amount of formula through his feeding tube over the course of an hour or two, every so often during the day and then probably continuous feeds at night. We hope this will help motivate him to be hungry and want to eat. He is making great strides in therapy. They keep reminding me that he has to master his gross motor skills before he can be successful at fine motor skills, such as his mouth and tongue (eating). The physical therapist today said he is one of the strongest post-transplant kids she has and that he is doing really well. She was also impressed that he is such a good worker! It was very interesting—she used an exercise ball to help challenge his balance and strength. She literally had him do tummy time on the ball. Then he sat and then laid on it and she rocked it and he was forced to right his head when she tipped the ball.
Michael has been a good little helper. He would like to carry Peter around by grabbing a fist-full of the front of his (Peter’s) outfit. That was a firm no from me. Michael’s response was, “Well…I can.” I know you can, but you do not have permission! He is always telling Peter he loves him and singing songs to him. Tonight Michael was disgusted with me because it was bedtime, basically, and he didn’t want to go to bed. So when I told him to brush his teeth he defiantly ran to the bedroom and curled up on the bed in protest. I took care of Peter and then went to tell Michael to brush his teeth. He was asleep. He pouted himself into early bedtime.
Please continue to pray for no rejection or infection. I’m not sure if Peter has a cold. If he does, he is doing just fine with it. We are making every effort to protect him, but the reality is that germs are everywhere—and we have two older children in school. It’s a hard balance to live.
The Lord gives perfect peace to those whose faith is strong. Isaiah 26:3
Physical therapy
Peter got here all by himself–he’s a roller now!
Peter grabbed my glasses off my face!
Brothers.