Avery's Adventure: 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!