Toby had a check up with the opthalmologist and passed his vision test with flying colors.  At a previous visit, he was given homework- pictures to learn to identify.  This visit, he was tested, wearing his glasses and each eye separately, and correctly identified them all at decreasing sizes.  Evidence that patching has been effective at strengthening the weaker eye- and that the corrective lenses are enabling him to see clearly!  The staff could not have been more pleased.

He also made a somewhat unexpected visit to the U of M to meet his new pulmonologist.  Several things have come from that visit.

Toby is having a swallow study done this week.  This will screen both for any problems that may have contributed to his feeding difficulties and for any contributing factors to his respiratory status.  (He still has a fast respiratory rate.)

He is also meeting with an Ear, Nose, and Throat doctor about his continually enlarged tonsils.

Next month, a pulmonary function test is scheduled and will  hopefully provide some hard data about the status of his lungs and inform future treatment options.

Toby has switched from using a nebulizer for his twice daily breathing treatments (10 - 15 minutes of needing to sit still and keep a mask in place) to an inhaler with a spacer and mask (2 - 3 minutes total time and  only about a minute with the mask).  This has made every day this week much easier.  Toby loves it- and so do we!

His nutritionist was very pleased with his growth since his last visit.  We had decreased his tube feedings a couple weeks previous and rescheduled them to maximize daytime hunger.  Toby has responded well to this and been motivated to eat more and to continue to try new tastes and textures.  He has done so well that we were able to decrease his formula volume even further.  He is now only receiving half of what he was three months ago!  This is thrilling and a  huge step down the road toward oral feedings.  Even more thrilling is that he is becoming more and more open to trying new foods.  Last night, he ate cooked pasta for the first time.  He has enjoyed uncooked noodles for some time but had no interest in them once they ceased to be dry and crunchy.  Hunger is truly a great motivator. 

In addition to the UM visit this week, Toby will be seeing his pediatrician for his three year check up.  So we are looking forward to a busy week and hopefully more good news to follow.