Yesterday Tim and I took off of work and took Avery to the Cleft Palate Clinic at the Main Campus. It is basically trick or treating, going from one specialist's office to the next. We saw 5 specialists that day. It is exhausting but it's nice to get it done in one day. You see each doctor in the morning and then they all get together and discuss your case and decide on a plan moving forward.
First up was ENT. Dr Hopkins looked in her ears and one had some wax and the other was completely blocked. I asked if he could clean her ears before we moved on to the audiology portion of the day. He scooped out as much wax as he could. He said it was hard to see if any fluid was in her ears but he would wait for the typanometry and the hearing test results. He still feels Avery should get tubes or hearing aids. Tim and I are completely against the tubes. He said there shouldn't be as much draining since she has had the cleft palate surgery but I am very hesitant since she still has a fistula. Tim and I agreed that if it turns out her hearing test shows hearing loss, we will look into hearing aids. Dr Hopkins said that just because she would get hearing aids now doesn't mean that she will have to wear them the rest of her life. He said a lot of kid's hearing gets better as they get a little older/bigger and that many don't need hearing aids by age 5.
Next up was audiology. They did a test where Avery was on my lap and they had sounds coming from different speakers at different volumes to see if Avery would turn her head. The audiologist or assistant was sitting in the room with us and would move little animals around to get Avery's attention, having her look in one direction so it would be noticeable if she turned her head for the noises. She did turn her head for some but I think she was more interested in the animals moving in front of her and not the sound to the side. I don't think this was a good test to prove/not prove that she had hearing loss.
The next part of the test was where they put these little probes/ear buds in her ear and see if the sound bounces off her ear drum. Avery has really really small ear canals and they can never get the ear buds to stay in place. It must have fell out over 10 times. I cant fathom how these tests can actually be accurate if they can't even get the ear bud to stay in place. Here is more about the tympanometry test: Click here
After the audiologist, we saw Psychology. I am not sure why since Avery can't talk but she just asked us how we were doing and how we were handling everything.
After Psych, we saw a pediatrician. She asked if Avery was a good eater. I said it's really hit or miss. Some days she eats an ungodly amount of food and the next say she hardly eats anything. I told her that Avery has never drank more than 4 oz at a time. The doctor wants Avery to have a Gastric Emptying Study done to see how fast food leaves the stomach. Avery would swallow some barium and they would watch as it goes through her stomach. Here is a little bit more about it:
Gastric Emptying Study
The doctor also would like Avery to start with speech therapy since she has only said 3 words so far (mom, up, hi). I told her I wasn't against it but it is difficult with one of us taking off of work since this is Tim's busy season (he works 7 days a week) and she already has Physical Therapy appointments every other week. The doctor advised that I apply for FMLA just in case. She asked why I never applied for it before since Avery has had many issues and hospitalizations and I said my boss has been very understanding with everything. She advised I get it just to be on the safe side so I said sure. The hardest part is getting a doctor to fill out the FMLA forms and she said she would so I will be applying for FMLA.
Luckily, there is a Cleveland Clinic rehab/speech facility in Middleburg Hts which is located three minutes from our house. I am going to call today to set up a consultation. Hopefully she won't need intensive speech therapy multiple times a week. I think the doctors are soooo concerned with her ears because they think that is the reason she isn't talking yet. If we could get her to start talking, I don't think they would concentrate so much on her possible hearing issues.
Last up was Dr Doumit, her cleft palate surgeon. This was going to be our last time seeing him since he is moving back to Canada. He examined her and she still has the fistula which measures about 1mm x 3mm. He said when kids have a cleft palate repair, they have a 10% chance of them having a fistula as a complication/side effect from the surgery. Up until Avery, Dr Doumit had a 100% success rate, with no one having this happen. I kidded around with him that Avery ruined his perfect record at the Cleveland Clinic. He said he still doesn't think she is going to need surgery. The tissue is touching together, there is just a small slit. If she would ever end up needing surgery, he said it would take less than 20 minutes to fix and it would only need about 3 stitches.It doesn't seem to be bothering her and he said it shouldn't affect her speech so he wants us to return in a year. He said I can email him in the mean time if anything happens. I believe he might still be doing some consulting work with Cleveland Clinic and might come back every so often so if we needed anything, he would be glad to see her.
I was exhausted after spending 4 hours at the clinic. I fell asleep even before we got out of the parking garage.
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