Big Couple of Weeks

In the last two weeks, Connor has had three major appointments at the Children’s Hospital of Philadelphia (CHOP).

The first was the Feeding Team.  I’ve dreaded the last few of these appointments (see March 1 blog), but this one wasn’t so bad.  It helped that he had that major breakthrough with his eating form a few weeks earlier.  It was great to have progress and happy news to report to the team this time.  They had a few suggestions regarding feeding and what I was pureeing for him, but nothing too overwhelming. The Nurse Practitioner on the team put him on Miralax to help with constipation.  So far it hasn’t done much, but we’ll just keep upping the dose little by little until it does. The Occupational Therapist was concerned when she saw Connor with his thumbs tucked in-between his pointer and middle fingers.  She wants him to be fitted with hand splits that will force him to have his thumbs out.  She said it may even help with him grasping things, but I can’t imagine how a brace on your hand will help with that.  I guess we’ll see!

This past Wednesday, he was at the Neuro-Muscular Clinic.  I was a little sad after this appointment because by the time we actually saw the doctor, Connor was tired and hungry so he really didn’t “perform” very well for her.  He didn’t want to sit or bear weight on his feet or roll over on his belly and had very little interest in his toys.  Sometimes I feel like the doctors don’t really believe me that he can do what he can unless they see it firsthand, so I was bummed. But not much I could do about it, so gotta just move on.  The Geneticist reported back that all of the tests had come back negative – meaning that all the genes they currently have linked to Joubert Syndrome are not why Connor has JS.  So now we just wait for research to discover something else and then we’ll get that new panel of genes tested.

Little man ready to head to the OR.
They stamp the side they are supposed to
operate on so there isn't any confusion or
mistakes made!

And finally, on Friday Connor had surgery on his left eye.  Here are some more medical terms for ya - esotropic hypertropia Strabismus.  Basically, his left eye drifted in and up, especially when he looked to the right, due to the lack of coordination between his extraocular muscles (the six muscles that control the eye).  While it’s a fairly simple surgery, it’s still pretty nerve racking to have your little guy go under anesthesia so a doctor can cut his eye muscles.  But (after a three hour delay) everything went very well and we are so thankful to Dr. Mills and the great team at CHOP that took care of Connor.  Before he went into the OR, eight different medical professionals came to check in with us, explain things and answer questions.  There was no doubt our Connor was in good hands! 

He’s still recovering 48 hours later.  His eye is bloodshot and a little swollen and bruised.  He isn’t his normal cheery self and his appetite isn’t what it should be.  We’re hoping that by Monday or Tuesday he’s feeling closer to 100%.

Clara and her horse, T.A.T.

We’ve enjoyed an unusually quiet weekend at our house.  I’m off and around and there isn’t too much on the social calendar.  It’s been great.  Clara, Brent and I did go on a bit of a family adventure today, though.  We went on a great trail ride on horseback.  We’ve had it planned for a month and Clara was so excited to go that we just had to leave the little guy for a few hours.  It was super fun and also gave us some special time with our darling girl.

Current requests for prayers and good thoughts – continued healing for Connor’s eye, continued improvement in his feeding and sitting and that he starts to say a new word or two very soon.