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!
I love swimming in my pool..and apparently I also love sticking out my tongue
See, sticking out my tongue again. Mommy and Daddy are starting to pack. I got in the suitcase to make sure they didn't forget to pack me.
Mommy and her huge belly and me and my sweet pool..and little belly
My hair was getting long. I got 4 inches cut off. This was the before picture. Mommy forgot to take an after picture.
More packing, which box do I go in?
If only I got along as well with the chickens as the dogs do! I am not a fan of the chickens.
My buddy Aria and I
We are BFFs
