2nd Annual Cleft Clinic

Cleft Clinic was last week! Wyatt goes to clinic once a year to meet with a variety of specialists who help to coordinate his care. We are set up in a room and the cleft team comes by one by one to meet with Wyatt.

Audiologist & ENT

Hearing problems can occur more frequently in children born with clefts so we meet with an ENT and audiologists. We see them both at cleft clinic and follow up with visits to an ENT every six months or so as needed.

Wyatt had tubes put in when he was 6 months old to help with fluid buildup and infections. When they checked his ears and hearing at clinic his hearing in his right ear was perfect but his tube in his left ear was falling out. He does have mild hearing loss in that ear due to fluid buildup. We are going to have his ears checked again in six weeks and if it isn't cleared up by then he will probably need his tubes replaced.

One of the questions we had going into the day was whether or not we should have Wyatt's tonsils taken out. He had a severe case of tonsillitis this year and his tonsils have always been huge. The ENT advised against rushing into having his tonsils out. Even though they are huge they haven't cause persistent issues so we will just keep an eye on it. The fact that they are so big could also be helping him get closure for speech. If he needs them out in the future we would have to meet with speech and do scoping (put a camera down his nose) first so they can get a picture of how everything is working in there.

Photos

They take pictures while we are there for his records. 

Pediatric  Dentist

When we met with the pediatric dentist we learned Wyatt has a cross bite and his upper jaw is smaller on the left side. With his surprise tooth (or "something") that came in in his cleft he has all his teeth!! Yay!

To help shape his upper jaw we found out he will need an expander around 5 or 6 years old when his permanent teeth come in. It is a device that goes in the roof of his mouth and is attached to the teeth. Some come with a key and for about 2 months we would turn it every few days. It will stay in for approximately 3 to 6 months after that to hold the shape. Expanders look something like this:

 or

Funny story - Mike went with Wyatt and the Audiologists to the room where they do the hearing testing. On the way back they saw a poster on the wall of an expander and Mike was like, "Wow. What is that?" Little did he know the next doctor we saw would tell us Wyatt would need one! :)

Orthodontist

The orthodontist said everything looks really great. His teeth and the enamel look really good. He has a positive overbite and crowding. They may remove baby teeth early to help his permanent teeth come in straighter. They may also have to remove permanent teeth due to the crowding but that isn't for sure. 

The orthodontist would be the one to put in the expander. It will help to form his upper jaw to match the lower. He said they would probably use the Quad Helix Expander which is the one on the left above. Around expander and bone grafting time they will do a CT scan to get the whole picture. It will allow them to see bone structure, missing teeth, etc. The expander and bone grafting would happen around the same time and everything would be coordinated with speech, etc.

The orthodontist commented on his monster tonsils. Pretty much everyone does.

Speech & Language Pathologist

Wyatt has been receiving speech services through our school district for the past year. The cleft team also keeps a close eye on his speech development. From the speech evaluation we learned his speech issues are developmental and not cleft related. He does not need private speech therapy at this time. He is making good progress so we will continue what we are doing.

Plastic Surgeon

Wyatt's plastic surgeon wasn't at clinic this time so we saw someone else. It worked out okay because he won't need any surgeries for a while that we know of. The surgeon we saw commented on how great his lip looks. He said he wouldn't consider any surgery until Wyatt is a teenager if that is something he wants. The more surgery you do the more scarring can build up.

Oral Surgeon

The oral surgeon said they don't come into the picture until much later but said Wyatt's facial growth looks normal. The oral surgeon was our last visitor.

All done! We took a break while they met as a team to discuss Wyatt's case.

The day ended with us going back for a brief report and any follow up instructions.

We also got to see Anna before we left!

All in all it was a good day. We learn something new every time we go. Wyatt did AWESOME! He is getting over a cold and wasn't feeling the best. Even though he would ask if we could go home after every specialist he still did a great job listening and following instructions. We are so proud of him!

Cleft Mom Support

One of the first things I did after we found out about Wyatt's cleft was join online support groups/boards for parents. I also started this blog as a way of sharing our story. It is through this network of online support I was able to make connections with other mothers of children with clefts.

These connections have been extremely helpful! It is amazing to me how kind, helpful and compassionate complete strangers can be. Mothers of children with clefts are so eager to offer each other support and advice. There were times I was so overwhelmed or just didn't know what to do and these ladies were there for me with everything from emotional support to tips on how to get Wyatt to eat again after surgery.

There are a few ladies I am particularly grateful for. They all had little boys around the same time I had Wyatt and it has been fun to keep up with them and their families.

I was lucky enough to meet one of these wonderful women and her family while on a work trip to Portland last year.

This post was long overdue! Thank you Heather, Linda and Amy. Don't know what I would do without you.