21 Oct Little Update
I’m sorry I didn’t get to update at the end of last week like I said I would. Even during “winter lockdown” things can get pretty busy! Also, we are STILL having problems with Keegan’s email account (keeganharrison@yahoo.com). It will not send emails out but can receive them. We’ve asked Yahoo to look into it, but they said they “hope to have it resolved by the end of the month.” Gee, thanks. Sure hope it’s sooner than that!
Keegan got a good report from immunology. They don’t want to put him on antibiotics preventatively because that can cause his intestinal issues to worsen. We’ll see them again at the beginning of the year. We changed a few things up at his GI appointment. They ordered an abdominal sonogram because he had gained an odd amount of weight, even though he wasn’t processing his feeds properly. The sonogram didn’t show any fluid build-up, so we’re not sure what that was about. His weight came down a little bit by the end of the week when he went in for his monthly breathing treatment. Obviously, we want Keegan to gain weight, but the doctors have to be careful that he is “good” weight. We are also hooking his tube up to an extra bag when he’s sleeping that allows the formula he can’t digest to have somewhere to “escape”. It seems to be helping him with the restlessness, but sometimes it’s difficult seeing proof of his motility problems. Today, we are reducing his rate of feeds during the day to see if that helps his digestion. The bad part of that is he has to wear his backpack longer during the day, as it takes longer to finish his volume for the day. Hopefully, this is a small step backwards, and he will soon be headed back in the right direction.
At therapy, Keegan is doing wonderfully. He’s tried several new foods, and his oral skills are progressing well. The new foods may be one reason he’s having intestinal problems – we have to go very, very slowly in order to let his tummy adapt. OT is going well also, and we will likely add more speech therapy in soon.
Thank you for all your prayers. We really do feel them every day. We would greatly appreciate you continuing to pray for Hannah, Nate, and Avery. Everyone is stable at the moment, but all three of these young warriors are fighting hard to stay there. I know their families can feel your prayers too. The Lord provides for our souls in so many ways, and the prayers of family and friends are just one way. I know that in our weakest moments, one of you is praying for us. That alone brings such comfort. Thank you again for your support of our family. Have a wonderful week, and enjoy the few new pictures that are up HERE.
“But I trust in you, O Lord. I say, “You are my God!” Psalm 31:14