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.

I'm 2!

Wyatt is 2 years old today!

Then & Now

Here is Wyatt just moments after he was born.

Here he is 21 months later (18 months post lip adhesion, 15 months post lip repair, 12 months post palate repair).

Wyatt is one and a half!

Our little boy is getting so big. Here is a little about Wyatt and what he has been up to:

He has a MIND OF HIS OWN.

 He gets into EVERYTHING!

He is a PICKY EATER. It takes him a long time to warm up to new foods. He loves crackers, bananas, grapes, peaches, pears and yogurt. Lately we are working on meat and veggies. He will eat them sometimes. ;)

He talks quite a bit and MIMICS everything he hears. He also likes to SING. "Let it Go" from Frozen is one of his favorite songs. We will hear "Let it go, let it go..." over and over. "Go" seems to be a favorite word. One of my favorite things is when I ask him if he wants to go somewhere and he replies with, "Go, Go, Go!" Other favorite words or sayings are uh-uh, get down, and all done.

 He learned to drink from a SIPPY CUP and STRAW! This is big milestone for a kid with a cleft. This is at the level of first word and first steps in my eyes.

He loves to THROW BALLS and play with TRUCKS.

His BLANKET is his constant companion. He reminds me of Linus from Peanuts the way he walks around with his blanket dragging behind him or slung over his shoulder nuzzled against his face.

SHOE SHOPPING is not a favorite activity.

He has SELECTIVE HEARING. "Get away from the outlet" means nothing to him but "Let's go for a walk" has him running to the top of stairs doing a happy dance.

Wyatt is such a fun, sweet, and caring little boy and we can't get enough of him. 

Copycat

Wyatt had his first speech evaluation with Anna at the University of Minnesota yesterday. Anna is the cleft team coordinator at the university and a speech and language pathologist. We have been working with her since we found out about Wyatt's cleft before he was even born. We hadn't seen her for 6 months or so and she was excited to see Wyatt and how he was growing. One of the first things she pointed out was how great his scar looks. :) I asked about all the tissue under his lip and she said that was actually a good thing. They can always take tissue out but it is hard to make up for it when it isn't there. This was reassuring to hear and makes a lot of sense.

With the appointment right in the middle of nap time and being in a new place Wyatt was pretty quiet at first. Anna played with him with toys and bubbles and got to hear a few words and sounds. To give him some more time to warm up Anna worked with me on some assessments while he played on his own. Anna had a list of words for us to go through to get an idea of how many words he knows. She would say the word and then I would tell her if I had heard him using it. Wyatt was running around the room doing his own thing when we started hearing him copying most of the words she read! We didn't count the words he copied that I didn't think he knew for the assessment but what a stinker! It turns out he has a lot more to say than we knew. I guessed he only had about 15 words but the assessment at the clinic showed at least 40. We just couldn't understand him. He seems to be leaving the consonants out of most of his words but is copying the vowels. When he talks it doesn't sound like anything but gibberish if you don't know what he is doing. Since the appointment I have really picked up on this. He repeats everything we say. Wyatt is also very intentional with his communication. He gesture and and talks in a way that shows you he knows what he is saying.

Anna gave us a list of goals to work on until our next meeting with her. There are early childhood and other resources available but we are going to start by working with Anna once a month. Wyatt is still really young and he could outgrow or overcome some of this on his own. We could just wait and see but we would rather try to get out ahead of it just in case. There are other resources we could look into if and when we need it. He will have a more formal speech assessment after he turns two. She did say it sounds like his palate is working well. This is a good sign because it means he may not need additional surgeries to help with anything physical preventing his speech from progressing.

We also got a chance to talk with Anna about Wyatt's eating. He struggled to start eating more solid foods but is getting better and trying new things all the time. Wyatt's issues with food appear to be sensory related. We will continue to introduce new foods slowly. This slow and steady approach seems to be working for him. We don't let ourselves get stressed out about it and introduce foods one at a time. Once he gets comfortable with something we give it some time and then try something else. The first real people food he would eat without gagging and throwing up was crackers. He likes saltines, Ritz and graham crackers. From there we moved to toast and fruits. Right now we are working on some proteins like turkey. It is hard to know how much of his difficulty with solid food is due to the cleft or just a sensory thing for him. Probably a combination of the two. With all the surgeries and other appointments with his mouth he may be a little more sensitive to what goes in there!

We met with Anna for almost 2 hours! It was really good to talk to her, catch up on what was going with Wyatt, and leave with some specific things to work on with his speech.

Where we have been the last 5 months?!

For the first time since Wyatt was born we are not gearing up for or recovering from surgery. We have only had two cleft related doctor appointments since his last surgery in September. This is very different from the weekly appointments we started out with! From the time we found out Wyatt had a cleft during a routine ultrasound through his last surgery it had consumed so much of our lives. So much time, attention, and worry. Finally, finally this has taken a back seat and we are enjoying it. It is like a weight has been lifted and the sense of relief and freedom I feel is indescribable.

As everything seems to, our story and my need to document it has evolved. Blogging our story has been very therapeutic for me. Especially in those first months after finding out. While things have slowed down quite a bit Wyatt's cleft is ever present in our daily lives as we continue to work on related issues with feeding and speech. I do hope to post some more updates in the coming weeks.

Wyatt is almost 18 months old now and busy just being a toddler and getting in to everything. The word "no" means nothing to him. I guess he is just one that wants to figure things out on his own....

Watch him grow, Wyatt's first year