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.

Surgery, Swinging & Shopping

At our last ophthalmology appointment, the doctor said that it was time to do surgery on Connor’s eye.  Since last July his left eye has been drifting in when he looks right.  It’s bad enough that his pupil completely disappears and it’s preventing proper vision development. This is a different surgery than he had on his eye at 7 weeks, this one will involve his eye muscle.  It’s scheduled for May 24 at the Children’s Hospital of Philadelphia.  If all goes well with the surgery and Connor coming out of anesthesia, he won’t need to spend the night.  Prayers and well wishes are welcomed starting now!

In happier news, Connor is progressing nicely in his feeding.  Maybe the Speech Pathologist that started a few weeks ago has the magical touch or maybe the homemade food is really helping or maybe he was just ready to turn the corner, whatever the reason, we’ll take it!  His strange sucking tongue pattern is almost gone, he usually has good lip closure and sometimes even opens his mouth when he’s ready for another bite!  He still has a long way to go, but it’s nice to have some progress in this area.

The Speech Pathologist works with feeding, but also with communication.  Right now, Connor has one word – more.  It’s actually comes out “mo”, but there’s no misinterpreting what he’s saying.  He’s said “book” a few times and said “ma” the other day when I picked him up from the sitters.  While he can’t verbalize a whole lot, we know he understands quite a bit.  He knows our names and certain objects, he follows certain commands (the biggest deal right now is that his hands are constantly in his mouth, so “hands down” is our mantra with him), he looks to the window when we say “bus” (he sits there every morning and watches the school buses go by) and a host of other things to let us know he’s paying attention.  So hopefully we can develop a mechanism for him to communicate back to us because “mo” just isn’t going to cut it for much longer.

He’s also had some cool “firsts” in the last few weeks.  He got to ride in the shopping cart seat for the first time while I was running errands for work.  He had bumpers on either side, but really seemed to like this new view on shopping.  Connor also had a first at the nearby park – his first time swinging!  He loved it and I know that as he gets stronger this summer his time in the swing will increase.

Last week, I took him to his 18 month well visit with our pediatrician.  He’s 34 inches long and weighs 22 pounds 4 ounces.  He’s grown one inch in the last 3 months and gained half a pound. 

Prayer and good wishes requests: obviously for Connor’s surgery, for a positive feeding appointment next week and for continued progress physically and with his feeding.