Making Progress

Since Porter had the tubes placed in his ears his nose has not been running as much and he has had fewer secretions.  He isn’t pulling at his ears either.  The biopsy of his throat revealed more of inflamed tonsils but he cannot have those out until he’s closer to three. 

He hasn’t required oxygen for the past 5 days either which we are thrilled about.  Porter has been tolerating his speaking valve all day while he is awake and in the car which is a sign he’s getting stronger.  It takes more effort to breath with the valve on than with it off and he is making many more vocalizations.  It almost sounded like he said “ok” yesterday. Of course we’re still waiting for the “mama” and “dada” to come out of his sweet mouth.


All of Porter’s therapies are going very well.  He continues to work on crawling and now standing and his legs are getting stronger each session.  His fine motor skills are coming along nicely and he’s been taking a few more bites of baby food.  We’ve been replacing one of his formula feedings with blended food and eventually will transition over to all blended food until he can eat on his own.  Two of the blends aren’t bad but the Kale, Quinoa, and Hemp blend stinks and makes, as Oliver says, a hot monkey mess!!  Glad for him its going in his g-tube and not his mouth!!!

Porter had a cardiology appointment today and happy to report everything is looking good!  His echo looked great.  One of his levels that measures his rejection has been consistently low so they have slowly been increasing the dose of his medication.  He’ll have another blood draw next week to see if the increase has helped or if we need to go up a little more.  He will finish his steroid wean by the end of September, he should be finished with one of his meds next month and they’re starting to taper his blood pressure meds.   The doc is hoping to have Porter off some of his meds or at least significantly decreased doses by his one-year heart b-day.  His next cath/biopsy will be around that time as well unless something comes up earlier!


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