Avery's Adventure: Cleft Palate Clinic 2016

Its our favorite day of the year!!..Cleft Palate Clinic day. Just kidding. We dread going every year. Avery went to the Cleft Palate Clinic on June 16.

We ended up seeing:

Audiology

ENT

Speech

Genetics

Pediatrics

Plastic Surgery

Peds Dentistry

I saw on the schedule that we were scheduled to have an appointment with Peds Psychiatry as well but I cancelled that as soon as I saw it. Avery doesn’t need to see psych, she can’t even speak yet. They just try to charge you a $35 copay for nothing. I know its part of the program, but I don’t want to waste anyone’s time (or mine or BCMH’s money) seeing psych.

Overall, I think the day went pretty well. Of course Avery failed her hearing test again. They had her do the same kind of test she didn’t score well on last time. She sits in Tim’s lap, facing away from him. They hand her a little plastic ball and tell her to throw the ball into the frog’s mouth when she hears the sound. She did it sometimes, sometimes she was looking at us pointing to the ball, sometimes she was squishing the ball, sometimes she was looking at other things in the room…lol. I don’t think it’s a great test for a 3 year old. I think little kids get distracted way too easily. I know they will say she may not be following the directions because she can’t hear, but I say its because she is a stubborn 3 year old. I have no idea where she gets the stubbornness from. J They also said they think her ear tubes were falling out and to check with ENT, which was our next stop in the Trick or Treat of doctors called the Cleft Palate Clinic. They recommended Avery continue to try to wear her hearing aids at all waking hours.

We saw ENT next. He looked in her ears and said the one tube is out of place but still in her ear and the other tube is falling out. I was like “oh great, now she is going to need another surgery”. Luckily he said since there is no fluid in her ears, she wont need them put back in and to return for a follow up in 6 months. He also highly recommended she wear her hearing aids all the time.

Speech wasn’t on the original schedule I saw the day before but they randomly showed up in the room. They asked how she was doing and what services she was receiving. We said that while in her special ed preschool through Parma City Schools that she was getting speech 4 days a week for about 20 minutes a day. They asked if we wanted them to put a referral in to see speech weekly at the Middleburg Hts location, which we have gone to in the past. I know Avery’s speech is very delayed and I am all about helping her but I told them I wanted to wait and see what happens in the next few months. We are *this close* (I am holding my two fingers really close together) from closing on our new house. If that happens, she will be changing school districts. North Royalton has a really intensive special ed preschool that I am hoping she will qualify for since she is so delayed. Its 4 days a week from 9:30-3pm everyday (her current preschool was only 2.5 hours 4 days a week). If we get the house and she qualifies for that program, she will spend more time receiving speech services than she has had in the past. If we don’t get the house or she doesn’t qualify for the program, I will most likely be taking her once a week to speech therapy.

Next came Genetics which was another surprise, not on the original schedule. They asked us what has been happening and our thoughts on if we wanted any more testing. I told her that I am willing to do ONE more bloodwork test to test for everything they would ever want to test for but that it has to be covered because truthfully, I could care less if something is “wrong” with Avery. She is perfect to me. They mentioned something about treacher Collins again and I said why cant they test her for that and whatever else all at the same time. The genetic counselor said genetic testing is very expensive so they like to rule one thing out at a time. We basically told them that Avery wasn’t going to be a pin cushion, by testing her for one thing, having it come back normal and then test her for another random syndrome, only for that to come back normal as well and to keep testing. We know if she would have treacher Collins, there is nothing we can do about it and we cant prevent our future child from having it so we decided to do nothing. All of her previous genetic tests have come back normal. Also all of the genetic testing I have had on the new baby so far have come back normal as well so we aren’t that concerned.

Next was a quick appointment with pediatrics. Avery is still only around 21-22 pounds. The doctor said Avery is proportionate for her size and for once, they didn’t seem concerned about her weight. That was a relief. When you look at her, she doesn’t look underweight, she is just small in general but her weight is proportionate for her height.

Next up was dentistry and plastic surgery. They came in together with about 8 other fellows and residents. There is also a nurse/assistant who takes notes and then Tim, I and the stroller all crammed into an exam room. It was a bit crowded. Next time I will have to take a picture because its actually quite comical. Plastic surgery looked in her mouth and they all agreed that Avery doesn’t need surgery at the present time. They said the fistula in her mouth is very, very small and they don’t think its affecting her speech so they recommended waiting to do anything.

Hallelujah! Tim and I wanted to wait anyways because:

1. We want her to be a little older so her mouth is a little bigger so its easier for them to work in there.

2. We want to give her a little break after the surgery she had in December

3. We want her to be a little older so she understands why she can’t put things in her mouth after surgery..otherwise she will get stuck wear the arm restraints again.

Next up was Dentistry. When Avery needed her dental surgery in the winter, Cleveland Clinic didn’t offer pediatric dentistry so we had to go to UH which was a pain. I have my insurance is through Cleveland Clinic and all of Avery’s extensive medical history was at the Clinic. As of about 3 months ago, Cleveland Clinic now has pediatric dentistry again. The dentist looked in Avery’s mouth really quickly and saw she needs more dental work. She said the cavities seem to be failing and she needs more crowns. We tell her we brush Avery’s teeth but we don’t know what else to do. At the time, Avery was drinking a juice box and she said that was our problem. Avery should only be drinking water, nothing else. She said Avery should only have milk or very watered down juice with meals but every other time it needs to just be water. The plastic surgeon asked if she could drink juice and then we brush her teeth afterwards and the dentist said no, only drink it with meals. The dentist asked what insurance I had and I said Cleveland Clinic/Cigna and BCMH and she said the clinic insurance will probably deny it if we have the surgery at the clinic. I said that doesn’t make any sense. You are a clinic doctor and having insurance at a clinic location and they deny it. Obviously they need to fix their billing policy if I have Cleveland Clinic insurance and its getting denied when I am having services done at Cleveland Clinic. I said well Cleveland Clinic denied the claim when we went to UH so whats the difference..if its going to be denied, it might as well be at the clinic because then they have all her Op reports, etc. Luckily, Avery’s BCMH insurance should cover it wherever we get it done. Good thing because we just got an EOB in the mail saying patient responsibility is $32,000 from her dental surgery from December. We made an appointment for a dental consult in July and most likely Avery will be having more dental surgery in the next few months. That poor girl. I feel so bad she is going to have to go through another surgery. That will be #7.

Just a little light reading while I wait for the doctors.

Mommy thought it was funny that I picked up this pamphlet in the waiting room and started reading it. She said she hopes I wasn't trying to tell her something

We went paddle boating!

Just making a mess and having fudgesicle come out of my nose

Mommy is getting big fast! oh and the Cavs won the championship! I didn't think I would get to see a championship in my lifetime. I have waited 3 1/2 years for this!