We went to
the Cleft Palate Clinic on Thursday. The Cleft Palate Clinic is a day that the clinic
has once a month (typically a patient will go to it once a year) where they get
all the specialties together (plastic surgery, speech, psych, ENT, pulmonary,
etc). Each patient is put in an exam room and the specialists rotate in and out
of each room. They then meet at the end of the day to discuss each patient’s
case and decide together on a plan of action. They mail out a letter to the
patient with all of their recommendations. We did not go to the Cleft Palate
Clinic last year because we were already seeing ENT and Audiology and we knew
we didn’t want Avery to have the surgery yet to fix her mouth. We now would
like her to have the surgery this summer so we decided to meet with them. It’s
pretty much a day I always dread because it’s such a long and exhausting day.
We got there
around 7:50am. Of course I went to the wrong building because I forgot they
moved all the Peds specialties into a different building. So we had to walk to
the complete other side of the Clinic. If you never have been to the Cleveland
Clinic Main Campus, it is quite huge. We basically had to walk from E100 St to
E93.
We arrived and she got weighed (a whopping 34 lbs!) and measured
(39.5 inches) and the first person that visited our room was Social Worker. She
just discussed how things were going, why we were visiting today, how Avery’s
school district is at providing services (such as her IEP and PT, Speech, etc).
Next we saw Plastic
Surgery and Dentistry.
The last
time Avery was at the dentist, she had a few cavities. Tim told the dentist
that we were going to get Avery’s cleft palate fixed this summer so she decided
she can just fill them then.
The cleft
surgeon then looked in Avery’s mouth. Avery was surprisingly good, opening wide
and saying “Ahh” when they told her to. They looked at the fistula (hole in the
roof of her mouth between the hard and soft palate) and they aren’t certain
that is what is causing all of her issues. They are thinking it could be
because she has a short soft palate as well. According to Google, the soft
palate is movable, consisting of
muscle fibers sheathed in mucous membrane. It is responsible for closing off
the nasal passages during the act of swallowing, and also for closing off the
airway. During sneezing, it protects the nasal passage by diverting a portion
of the excreted substance to the mouth. This makes a lot of sense if this is
her problem. She still has food and drink come out of her nose sometime. We
originally thought it was just due to the fistula but the short soft palate
could also be causing it. In order to
really know what is going on, they want Avery to have a scope done. A camera
would be stuck in her nasal passage, toward the back of her throat. They would
then have her talk so they can see how
the soft palate moves and if it is big enough to do its job. Tim and I
looked at each other and we were like there is no way Avery is going let a
camera be shoved in her nose while she is awake. They cannot sedate her because
they need her to talk during the procedure. They said some kids, they have to
come to 4-5 visits to try and even then, they sometimes can’t get the kid to
talk while the camera is in their nose. I know Avery will have trouble with
that when the time comes. I think even most adults would have trouble with
that.
Next up a photographer came in to take pics of Avery’s
profile, face and inside of her mouth.
The next specialist was the Speech/Language
Pathologist(SLP). She is friends with Avery’s current speech therapist that she
sees weekly. This SLP was warned that she might not get any sounds out of Avery
due to her being really shy. She asked Avery to repeat a few words after her. I
was so proud that Avery did exactly as she was told. She then was asked to say “blow”
while holding her nose. She said it perfectly. (Her current SLP taught her to
do this so the air doesn’t escape through her nose). This SLP said that she did
so good saying it and she has many people, even when plugging their nose, that
don’t say it as well. We discussed with her that we know there are sounds Avery
can’t say no matter how hard she tries and that we will continue with weekly
speech therapy up to and after her surgery.
The second last person we saw was a Nurse Practioner
who specializes in Pulmonary and ENT. She checked Avery’s tubes and one is out
and it still looks like the other is in but on its way to come out. We did tell
her that if she needed new tubes, we are open to getting them when Avery is
under general anesthesia for the palate surgery. She said she will discuss with
Avery’s current ENT. We also discussed how Avery’s breathing is. We said she
only snores when she is really stuffy but we also mentioned that Avery still
wets the bed. She is such a sound sleeper, you can pick her up and move her to
different rooms and she won’t wake up. She has always had issues with accidents
in the middle of the night. Very rarely does she wake up dry, even if we make
her go to the bathroom right before bed and she has nothing to drink hours
before bed. She recommended Avery have a sleep study done to make sure she
doesn’t have sleep apnea or any other sleeping issues. She said she has
symptoms that would qualify her to get a sleep study such as being tired when
waking up (I mean, who isn’t?), her craniofacial features (cleft palate) and
also that she wets the bed. We will be scheduling the sleep study at some point
in near future (probably in the next two months). We also discussed how Avery
does not want to wear her hearing aid at home. As far as I know, she wears it at
school without a fight but at home she refuses. Tim and I discussed that it
would be nice if she would wear it at home because we think it would help her.
Lately, sometimes when we say something she says “what”, we repeat it and she
says “what” and then we say “You need to wear your hearing aid” and she says
no. Funny how she always hears that just fine..lol. We did say that we are
going to start off having her wear it when she is playing her ipad (so her ipad
will be like a reward for wearing it).
Last we saw
Psych. In the past, we have said we didn’t want to see pysch because Avery
couldn’t talk so we just thought it would be a waste of everyone’s time. We
wanted to see her this time because Avery has been acting out for two different
reasons.
One: She gets frustrated when we can’t
understand what she says.
Two: The main reason she acts out is
because of sensory issues. She doesn’t like the way the seams on her socks are,
she doesn’t like the way her underwear feels, her hair is in her face (and she
expects Tim and I to get it out of her face). She literally flips out when one
of the above happens. She screams and hits her head with her hands. We were
worried she would hurt herself. After talking with psych, she said not to worry
about that because once she is hitting herself and it actually starts to hurt,
that she will stop. She said if we want to see someone about the sensory
issues, we could go to Occupational Therapy.
Overall, we
were at the clinic from 8am-1pm. It is always so exhausting and I am happy that
is done.
Tim and I
were so impressed with how Avery behaved. She did awesome throughout the 5
hours. It’s a A LOT for a kid to have to sit there that long and then have to
deal with strangers coming in and out of the room and when the plastic surgeon
came in, there were like 6 other people in the room as well. We all know how much
Avery loves crowds!
Next up is
to schedule the scope.
We are
looking forward to some rest and relaxation this weekend.
Here is a pic that shows where the soft palate is.
