Cleft Clinic

I'm playing catch up on everything it seems these days, including this blog!  I need to record this while it's still fresh so we will have these memories years down the road.

Ok.  Jack Nathan had his first Cleft Clinic at Children's hospital last week.  It went great!  Although the day was very long for both of us, we had plenty of one on one time together while we waited to be seen by several specialists.

The surgeon was so nice, and very sweet to Jack as he examined his lip and mouth.  He said the repair should go just fine and he doesn't see anything of concern right now for the surgery.  We scheduled Jack's lip repair surgery for March 6, (later I realized we will need to change this b/c it's 2 days before we go on vacation) with a pre-surgery check up at the clinic a few weeks before. The doc said he will repair Jack's palate (the roof of his mouth) 6 months after the lip repair.

exploring

The speech therapist came and evaluated Jack's eating and communication abilities. She was very pleased that he is signing and using some vocalizations to express his wants and needs.  Then Jack had a hearing test which showed he does have mild to moderate hearing deficits.  These are most likely due to fluid in both ears and an infection.  He will have many hearing tests in the future to keep an eye on this.  Jack will need to start speech therapy soon after his palate is healed.

keeping busy!

ENT examined his ears and plans to put in tubes during Jack's lip repair surgery.  He said most cleft kids will need 3-4 sets during their childhood depending on their growth and speech development. He said we could expect to get a new set about every year.

Genetics came next and examined Jack from head to toe.  Because clefting can accompany many different syndromes they look to see if any other signs are present to confirm the need for more testing.  More good news!  Jack doesn't have any physical signs that he might have a syndrome and since he is developmentally on target there is no need for testing now.

All in all it was an encouraging day and we came away with the beginnings of a plan of care for Jack.  Now we brace ourselves for surgery!

Jack did really well for most of the day.  We both got a little tired after lunch while we waited in the big waiting room, riding the wagons over and over again.