Cleft Palate Clinic 2015

The cleft palate clinic didn’t go as well as expected on Thursday.

Here are all of the specialists that Avery saw:

-Pediatrician

-Speech Therapist

-Plastic Surgery

-Orthodontist

-Psychology

-Genetics

-ENT

-Audiology

 

Speech-

She recommended we get back on the waiting list for speech therapy through Cleveland Clinic since Help Me Grow discontinues when Avery turns 3 in August.

 

Pediatrician-

Avery weighed 17lbs 13oz and is 30.5 inches long. Still a little peanut. Even though she has grown and gained weight since the last time they were checked in February, she would like us to get her weight checked once a month at her pediatrician’s office. She wants to see if it seems like her weight is increasing, decreasing or plateauing. Avery’s poop has been pretty hard lately so she is going to change her prescription for Pediasure with Fiber instead of just the regular Pediasure.

 

Psychology-

She just asked how we were doing. We never really know why we have to see psych when Avery isn’t even talking yet.

 

Genetics-

They still think we should get Avery tested for Treacher Collins syndrome. They think she might have it because of her small jaw, ear problems, cleft palate, small cheeks, small stature, etc. If you have ever googled Treacher Collins, you will see that it doesn’t really look like she has it. Most of the people that have it have really deformed faces. I asked her why we should get her tested because it wouldn’t make a difference. There is nothing we can do if she has it and there is nothing we can do to prevent any of our future children from getting it. She said if she does end up having it, the  doctors might start to relax instead of continuing to drill us about her weight and short stature. I asked her what happens next if she doesn’t have it, if they would then test her for something else. She said yes. It seems like a never ending cycle. I don’t want to keep testing her for this random syndrome and that random syndrome. To Tim and I she is PERFECT and we could kind of care less if she has something. We are still undecided if we should get her tested for it.

 

Audiology-

Avery had a repeat hearing test done with a different audiologist than whom she normally sees. She sat in Tim’s lap, facing a woman who was playing with toys. They want Avery to look forward so they distract her by playing with toys. They then present a sound on the left or right side of the room through a speaker and they wait to see if Avery turns her head towards the direction of the sound. There were multiple times that Avery was distracted by the toys that she did not turn her head. In fact, she got so distracted that they had to take the toys out of the room. After the test they told us that it seems Avery’s hearing is getting worse. No offense, but I do not believe this at all. She is two years old. I could scream her name on the other side of the room and she may or may not turn her head, depending on what kind of mood she is in or what she was playing with. It was also her second last appointment of the day (after seeing 5 specialists before this one) so I think she was getting tired. They told us it seems like she can only hear 60 decibels and above which is moderate hearing loss. In December I believe they said she could hear above 40-50 decibels. I am not in denial that she has hearing loss but I do not think it is as bad as they say. We scheduled another hearing test for the first available with her usual Audiologist. They had nothing open until August. (That is one thing I don’t like about the Clinic. When I called for a hearing test when I took her to UH, they got her in two days later).

 

Orthodontist-

The orthodontist came in when the plastic surgeons were looking at Avery. He quickly looked at her teeth and said that her teeth are chipped but it doesn’t look like its from milk rot. He said her adult teeth could come in normal. We mentioned to him that Avery has been randomly grabbing her mouth when eating something, spitting it out and then crying. He said she could finally be getting her 2 year molars in and that sometimes it is uncomfortable.

 

Plastic Surgeons-

Our previous plastic surgeon, Dr Doumit, left the clinic last year so we knew we would be seeing a different surgeon. They looked into Avery’s mouth and said that she has a 8mm fistula that incorporates the hard and soft palate. They then explained how they would go about fixing it. They would take pieces of fat from the inside of her cheeks and place it over the hole and then pull the muscles on both sides together and stitch up a few of the layers. I started crying when I heard about the surgery. We were under the impression that this surgery was going to be simple compared to her cleft palate repair and now it sounds like its going to be more complicated. I started crying at this point. They also said there is only a 50-60% chance that it would fix the fistula. I would hate to have Avery go through this difficult surgery, only to not have it solve the problem. They said we didn’t have to get the surgery now, that it might even be better if we waited a little bit for Avery to get bigger and gain more weight. They said if they were to do the simple surgery of creating a fresh incision and just suturing it up that they can guarantee it would open up again.

The last appointment of the day was to see ENT. We told Dr Hopkins of our original plan of getting the fistula surgery and ear tube surgery at the same time. I told him that plan has now changed since the fistula surgery seems much more complicated than we thought. He said he is happy we have the hearing aids because if we didn't then he would really be pushing for tubes.

After talking it over, we decided that we are going to have Avery's ears rechecked and if her hearing is still bad, we are going to try tubes one more time. Fingers crossed that she won't have as many problems as she did last time with the tubes. We are going to hold off for a little while on the fistula surgery. Avery is finally getting back into the swing of things (starting daycare again next week!) and I don't want her to have a huge set back right now.
 

If you have a few minutes to spare, please watch this video. It was made by Cleveland Clinic to show to their Caregivers the meaning of empathy. It is a sad video but it makes you realize that sometimes your problems are small compared to others and you never really know what people are dealing with in their lives.

https://www.youtube.com/watch?v=cDDWvj_q-o8

I got a sand box because I liked sand so much on vacation!

I love sticking my tongue out for selfies

Waiting for the next specialist at the Cleft Palate Clinic

Smell my feet!

Sticking my tongue out again!

 What do you think you are looking at cow?

I like goats!

Kassidy and I were feeding goats

This donkey ate ice cream cones

Feeding the horses some carrots

 

Feeding chickens. We might be getting chickens soon! I am so excited

 

 

Avery's first airplane ride

Sorry it’s been awhile since my last post. We just got back from vacation late Saturday night and I am still trying to catch up.

Avery did pretty well on the way to Raleigh/Durham. She had a few bouts of crying that only lasted a few minutes. I don’t think she was crying from the pressure in her ears, I think she was crying because she was bored and didn’t want to sit in her seat. We brought toys, stickers, candy, etc to occupy her. The flight from Cleveland is only 1 hour and 4 minutes. Best flight ever! By the time you get up in the sky, its time to come back down.

We arrived in Raleigh around 7pm. Driving to Atlanta was going to take about 6 hours so we decided to drive part of the way and then spend the night at a hotel. We stayed at the Comfort Suites in Gastonia, NC, just outside of Charlotte. I chose that hotel chain because I knew if we stayed two separate nights (one night driving to Atlanta and one night driving back to Raleigh/Durham) that we would earn a free night on our next visit. We stayed at a Comfort Inn in Columbus and really liked it so I was just trying to plan ahead for our next weekend trip.

The next morning we made a few stops (including a KFC with a buffet which was awesome by the way) and eventually made it to Atlanta to visit our friends Jason and Rachel. They have a son, Travis, who turned two in October. Avery was excited to have someone to play with…and a house full of new toys that she has never seen before. The first night we just got some take out and hung out. The next morning, Tim, Avery and I went to the Tellus Science Museum. Travis had preschool and Jason had to work so we decided to do a little exploring without them. The museum was pretty cool. They had an area where you can “dig” with brushes through the dirt to find fossils and also a section where you can pan for minerals. We didn’t let Avery in the panning section because she would have been soaked, though she would have loved it. She did enjoy digging in the dirt for fossils. She cried when we told her we had to leave.

The next day everyone(except Jason because he had to work) went to the Georgia Aquarium which is the world’s largest aquarium. It was awesome. The Cleveland Aquarium doesn’t even compare.  Their beluga whale just had a baby two days prior so that exhibit was closed to the public but there were so many other things to see. One of my favorite parts was the penguin exhibit. They had this tunnel you can walk through and then pop up right in the middle of the exhibit and look out through a plastic window/bubble and be right there with the penguins. (see the pictures below).

Travis has a swing set with sand and it was Avery’s first time playing with sand. We didn’t know if she would like it or not considering she hated grass up until this year. She ended up loving the sand! Loved it!

The next day we drove to the hotel. We also went to Dave and Busters which is kind of like a tradition for us when we go on vacation. (well we went there on both trips to Columbus last year). I feel like this D&B was rigged though because you would swipe your card, the game wouldn’t work and then you would have to swipe it again. Then the ticket payout wasn’t working correctly. Anyway, I DO NOT suggest going to this D&B near Gastonia, NC.

The first night in Durham we had dinner at The Pit which is a southern barbecue restaurant. Avery was HORRIBLE and had to be taken outside at least 3 times during dinner. The next day we drove 2.5 hours to Wrightsville Beach. This is the first time Avery has been to the ocean. We didn’t swim because it was too cold but she loved playing in the sand. We all had a good time and I was lucky enough to get some crazy sunburn. (see picture below). The third day we just hung out and went to the playground, which Avery also loved. The next day we went to the Sarah Duke Botanical Gardens at Duke University. It was beautiful and HUGE! That evening we went to a Durham Bulls minor league baseball game. Avery was good for much of the game but started getting antsy around the 7^th inning. The funniest part the night is that every time the guy selling snow cones walked by us, avery held up her finger like she wanted to buy one. Every single time. It was hilarious. She ended up getting popcorn and cotton candy.

 

Avery cried and screamed on the way to the airport. We couldn't console her and we didn't know what was wrong. When we got to the airport, we gave her some benedryl and she fell asleep for over an hour. She woke up before we got on the plane. She started crying and screaming even before we took off and she didn't stop for 40 minutes. I felt horrible for the people around us. We tried everything..giving her a bottle, candy, toys, letting her watch a movie. Even a passenger a few rows behind us sent a toy up for Avery. A few times I thought she might have pooped and that was the reason but I checked her diaper and there wasn't any. I think she just had really bad gas and it hurt her stomach. Then during the last 20 minutes of the plane ride, she was completely fine. She watched Mickey Mouse Clubhouse and didn't even mind the landing.

 

 

Overall, we had a great trip and we want to thank Jason, Rachel, Travis, Greg and Lauren for your hospitality. We hope to see you again soon!

Just a warning: I took a lot of pictures on vacation. This isn't even all of them.
 

 

Mommy wondered if we packed enough stuff

 

Mommy and Daddy doing there traditional tequila shot at the airport. Doesn't seem like the server is too happy with us

Waiting to board the plane

Picture with Mommy

Look at all of those planes Daddy

Buckled up and ready to go!

Eating some fruit snacks

They brought stickers and toys to keep me occupied. I liked sticking them on Daddy's shorts

 

Mmmm a staple in my diet: butter!

 

 French fries, yum!

 

Travis and I playing together

Playing outside at Jason and Rachel's house

This was my first time ever playing with sand.

I loved it!

We are having a good time!

Story time with Rachel and Travis

 

Wheee!

I loved the playground!

Trying to climb up the slide

 

At the Tellus Science Museum

 Fun with Mirrors

I liked watching the coins spin around

Digging for fossils

I cried when we had to leave this room

 Why does it look like Mommy is pooping in this picture?

 Dinosaurs!

At the Georgia aquarium. It was awesome! That's an albino alligator in the water behind us

Everyone is looking at the exhibit and I am looking at Travis

This is the cool penguin exhibit Mommy was talking about. Look, we are right by the penguins.

They had some huge fish tanks!

Look at those cool pink fish above our heads

So many fish!

 

Walking through the tunnel

Look at that big fish daddy

Only sat here for 2 seconds. Mommy is surprised she was able to get a pic of us together

Dolphins!

Making faces for the camera at Dave and Buster's

Playing video games with Daddy

Phew, having fun is a lot of work!

 

Smile!

More smiles

You mean the sand doesn't go on the blanket?

Look at all this sand!

Me and Daddy building something

Going for a walk on the beach. I DID NOT want to go for a walk.

Letting the wind blow through my {crazy} hair.

The water was too cold for us to swim

 

I have an ice cream mustache

 I am not sure how mommy managed to burn her legs like that!

Having a good time at the playground

Why am I smiling. I am sure this grate hurts my knees



This is so fun

Hi!

Mommy and Daddy think its hilarious when I walk like this with my hands behind my back .

 This is a rare picture because I usually don't like to walk, I like to be carried.

I love Daddy so much!

At the Sarah Duke gardens at Duke University

It was so pretty here

Why are we smelling this flower if it doesn't smell?

Smiling for the picture but I really want to g in th

See, I told you

I love being outside and I love daddy

Playing with water on the deck

 

 

At the Durham Bulls game. Mommy took a selfie and when I can see myself on the camera I now stick out my tongue.

 

Greg and Lauren. Aren't they cute? I was in their wedding!

Mmmm cotton candy. Now where is that snow cone guy?

I am going to pick your nose!

Hey, what are you looking at?

I was getting a little too comfortable with the bull

Family photo!

Me sitting with Uncle Greg, Aunt Lauren and their dog, Bruiser before we left for the airport

This was taken during the 3 minutes I wasn't crying on the plane. I started dipping my fingers in the chocolate instead of the stick.