Pediatric Dentist Appt & First Visit From The Tooth Fairy

Wyatt had an appointment with the pediatric dentist this week. The great news is he has all his teeth! His "lucky tooth" that is coming in his cleft is actually a tooth. They got some blurry x-rays even though the poor little guy kept gagging and threw up. He is going to need some dental work down the road for his teeth and jaw but we already knew about all that.

He had something coming through his palate and we were never really sure what it was. (Clefts can cause all kinds of weird things to happen... extra teeth, missing teeth, backwards teeth, etc. You never know what you are going to get!) The guess was a bone spur or small tooth. It didn't show up on the x-ray and the dentist was able to make it move so they decided to pull it out. A little topical and one good pull and that was that. We wondered if the Tooth Fairy would be interested. She was.

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.

Speech

After a couple of initial speech visits with Anna from our cleft team at the University of Minnesota last summer we were referred to look into the speech services the school district provides. This was a nice option that would be closer to home. A small team from Early Childhood Special Education (ECSE) came to our house to evaluate Wyatt. He does need help with his speech but would have automatically qualified anyway because of his cleft. His teacher comes to our house once a week. It took Wyatt a while to warm up but now he is happy to see Virginia and the toys and books she brings with her.

Normally Mike is home for these visits but with Mike off on a field trip with Bella I was able to be home for speech. It was fun to watch him take his seat on the floor with his feet tucked under him waiting patiently for play time with his teacher. They play with different books, puzzles and toys while practicing making sounds and saying words. It is amazing to me how his teacher is able to help him correct his pronunciation through this play and hand gestures. He has his 6 month review tomorrow to check his progress.

Update:

Wyatt had his 6 month speech review last week. He is making  progress but his teacher said it took him a while to warm up and in the beginning he was really still working on building his vocabulary.

What they are working on now is his pronunciation. There are certain sounds he makes during speech with help but not on his own naturally. His teacher said he doesn't struggle as much as other cleft affected kids with making certain sounds. She also said she doesn't think he needs private speech at this time. That is the same thing Anna was saying so it was good to hear that confirmed.

For now they will focus on pronunciation and air flow. Wyatt pushes the air laterally out his cheeks rather than through the front. This can be a hard habit to break. They will continue to work on this by focusing on placement. This is where he puts his tongue and how the air comes out. He needs to bring his tongue up to the teeth to pronounce his t and d's better.

When he is 3 years old he will be able to better understand these instructions. He will continue to work with the teachers through home visits until he turns 3. He will be evaluated again in the summer to determine if he will still need/qualify for speech services through the district. If he doesn't qualify through the district but we think he still needs help with his speech we can look into private therapy. Next year, if he qualifies through the district he would start one of two programs offered through the district. These would not be in our home. They would be in a more organized setting at the local elementary school or the district center.

Considering where we started I think everything is going really well. We can understand a lot of what he is trying to say but there are times it is hard to understand. We will stay on top of this and make sure he gets whatever help he needs.

First Cleft Palate Clinic

Today was a big day for Wyatt! He went to Cleft Palate Clinic for his first comprehensive interdisciplinary evaluation and treatment planning. This will be a yearly activity for him.

Before Wyatt was born we learned we would be working with a cleft team which would consist of a variety of specialists to coordinate his care because clefts involve so many different things. We have met a few of these specialist over the past two years but this was the first time we met with all of them on one day.

The first thing we did was meet with Dr. Anderson the Program Director. He gave us an overview of the day and asked about any concerns we had. After this brief meeting with Dr. Anderson they took us to our room.

The specialists would be stopping by one by one throughout the morning to meet with Wyatt.

The first couple of visitors checked his height and weight and took pictures.

Then we met with Anna the Cleft Team Coordinator and Speech and Language Pathologist. We have been working with Anna since before Wyatt was born. Anna reviewed his speech plan and they talked and played for quite a while.

His words are emerging and while there are some things he needs to work on he is doing well. We will continue to work on speech with the district but go back to meet with Anna in 6 months to see if he should start private speech therapy. She said, “It is fun to see him doing so well.”

The Nurse Practitioner was next. She went over his overall health history and the big picture stuff. She checked his ears to see how they looked and if his tubes that were put in a year and a half ago were still in. All looked good!

The Audiologist and a graduate student were the next to visit with Wyatt.

They checked his ears and did several hearing tests. His ears aren't plugged and the tubes seem to be functioning well. His right ear didn't pass one of the tests so we will schedule a follow up visit with an ENT a local clinic to have that checked out. Wyatt will have hearing tests every 6 months until he is 5 to make sure everything looks good.

Dr. Lacey, Wyatt’s plastic surgeon, also stopped by to take a look at everything.

He said everything looks good and his scar on his lip looks great. Wyatt is missing one tooth where his cleft is and Dr. Lacey was stumped by a rogue tooth or bone fragment emerging from the roof of Wyatt’s mouth. Wyatt's lip, palate and everything else look good so there shouldn't be a need for surgery for a while.

The dental team came in next.

Everything looks good with his teeth! We were referred to a pediatric dentist for ongoing care because they have more experience dealing with little ones and special cases such as clefts. One of our follow up items is to get him in soon so they can do xrays of the tooth/bone in the roof of his mouth and see about having it taken out.

The last specialist we saw was Dr. Service the ENT.

Wyatt's ears were checked for the third or fourth time today and they still looked good. :) He said Wyatt’s ears look healthy and his nose looks good too. Apparently, he has huge tonsils. This really isn't a surprise considering what Bella had going on. We will just keep an eye on them for now. He said his tubes are still there and seem like they are working.

Phew! All Done!

After meeting with everyone we got a break for lunch while they met to discuss his case.

We had lunch at Big 10 and then walked around a bit.

When we came back from lunch we met with Anna and went through Wyatt's plan. Dr. Anderson heard about Wyatt's bone fragment/spur/tooth and wanted to check out so he came in to take a look before we left.

Wyatt was exhausted after meeting with all of his old and new friends and fell asleep within minutes of getting in the car.

We will be getting a full report in about 6 weeks. It was a long but a very good day. Wyatt was amazing! He was so patient and followed directions. We were so proud of this little man today.