Last night we went to the
craniofacial clinic (aka: cleft palate clinic) with Henry. We really didn't know what to expect, except we were to be there at 5:30, and we'd be meeting with a lot of specialists. So, after checking in, we set up camp in a room and a parade of about 15 people rotated through; checking out Henry and telling us what they do and what to expect. I will now condense 2 hours of information into one blog to keep everyone updated.
First the nurse Kathy: Henry has gained another 8 ounces this week. (up to 9lb 12oz) He has grown an inch since birth (22 inches). Kathy doesn't mind getting peed on... Henry sprayed her twice. A job hazard to weighing naked babies.
Dentist/orthodontist: He will need orthodontia (so did I), but we don't need to seem them again until he's 7. Lucas is VERY happy that Henry won't need headgear.
Physical Therapy: Henry is very strong. Since he spends so much time on his tummy, he can hold his head up much better than other four week
olds. BUT, since he spends so much time on this tummy... he only really views the blankets underneath him. So, when he is on his back/side we need to help him learn to track and grab for things. Kids that spend so much time on their backs are a little better at this than him. (but he's only 4 weeks old... what do they expect!)
Social work: We really don't need help on this front...we both feel we are doing a great job, especially with all of our family/friend support.
OMFS (oral-
maxial-facial-surgery)- Henry's jaw should naturally grow forward. By the time he's done growing, he should have a very normal looking jaw. Probably no need for jaw surgery.
Plastic surgery: They fix the cleft palate. He does have both soft and hard palate involvement. But his "jaw line" is
intact. Surgery is usually done between 9-12 months, but since he has such a small lower jaw, we may wait until 15 months. This is purely to give the surgeon more room to do the surgery. For insurance purposes, I'm hoping for a December surgery. The plastic surgeon is very impressed with his weigh gain and how well he's doing for having such a large cleft palate, so she said she would meet with us in November to see if a December surgery is possible.
Speech Therapy: he will need speech therapy. I had speech therapy, it's fine with me. But currently, she is more interested in his eating skills. She is very happy with how well he's eating and gaining weight.
Audiology (aka: ears): Henry will need tubes in his ears. Kids with cleft palates have an increase of fluid behind the ears. Hopefully his tubes will be placed when his cleft palate is being fixed. However, if we have to wait to fix the palate until he's 15 months, we may do the tubes sooner.
Geneticist: This is not a genetic issue. Other than the Pierre-Robin there is nothing "wrong" with Henry. Any future kids (if we have them) will not have any higher risk of a cleft palate. Basically, this was a mechanical failure of growth not a genetic one.
OVERALL: Lucas and I heard everything we wanted to hear. Yes, Henry has a very small jaw. Yes, Henry has a tongue that is very far back. Yes, Henry has a large cleft palate. Yes, Henry is very cute. Yes, he is growing better than other kids like him. Yes, his jaw will grow in time. Yes, his tongue will grow forward. Yes, he'll be able to stick out his tongue. Yes, for everything Henry has, he is doing GREAT!
Seth and Owen watching our new deck be built. (ours had rusty nails and rotten boards... we figured better "bite the bullet" and dip into savings to make a better play area for Owen this summer)
Sweet Beatrix.
Seth and Owen watching our new deck be built. (ours had rusty nails and rotten boards... we figured better "bite the bullet" and dip into savings to make a better play area for Owen this summer)
Sweet Beatrix.
