Avery's Adventure: July 2014

Monday, July 28, 2014

A Second Opinion

It is hard to believe that Avery's page has over 60,000 page views!

Last week we went to have a second opinion about Avery’s ears. We decided to go to University Hospitals (competitor of the Cleveland Clinic). We wanted to make sure they got the same results at Cleveland Clinic when it came to Avery’s hearing loss. We were hesitant to go there before because it is possible that we will have to pay some of the bill. (When we go to CC, the bill is completely paid for, including the copay)

We met the Audiologist and she was very nice. We were there about an hour and they did a few tests on Avery. Towards the end Avery was getting antsy so I gave her some marshmallows to eat while she was doing the hearing tests. She started just throwing them all over the floor. (She sometimes does this at home in her highchair when she has had enough and the dogs love it!) The audiologist and audiology student(?) Came in and picked up all the marshmallows for me! They got the same results that Cleveland Clinic did. They think she could hear about 40-50 decibels and it is muffled. They think it is just fluid. She asked if we ever had a CT on Avery’s ears and we said no but when she had the tubes put in last year, they said her ears “looked normal”. I asked if there was anything else to do for the fluid besides tubes since we had such a horrible experience with them last time. She asked if we ever tried allergy meds. I asked if allergies could cause her ears to be blocked with fluid and she said absolutely. When she said that I heard the infamous “ahhhh” sound in my head and the heavens parted…lol. We were upset that all ENT’s that we saw at the Cleveland Clinic (3-4 people) would hear the word “fluid” and only give us the option of tubes. They never even thought about the possibility of allergies causing it.

The audiologist said that we need to find out why she is getting the fluid. Allergies/allergy meds might not be the answer, but if we tried it for a month or two and it doesn’t help, we could rule that out. I am happy we went to get a second opinion. I feel like we are much closer to getting an answer as to why she has the fluid and I am optimistic and hoping it is just allergies.

We are going to be talking to her pediatrician to see if we can get her on some allergy meds.

My first Indians game!

I really liked the fresh cut fries

Mmmm fries

This place is weird. There is a pig wearing a baseball hat right behind me

Hanging out in the nosebleed section!

I was having a good time eating popcorn and then throwing it at the people in front of me.

I love the water table

Ummm I may have gotten into the drawer while Mommy was showering.

Peek a boo

Chewie was thirsty so I decided to share my bottle with him.

Daddy took me and the dogs for a walk

Playing with the water table and my cousins

I climbed up on the lion all by myself while carrying my treat cup

Getting into trouble

We went to the park and Kaitlin pushed me on the swings

Hey guys, lets smile for a picture for Mommy

Kaitlin and Eddie came over to play while Aunt Janet and Uncle George went to dinner for their anniversary

Making cards for their anniversary

I may or may not have gotten more marker on myself than on the card I made for them

Shopping with my friend Aria

I choose fruit over Rice Krispie treats. I love fruit!

One of my favorite things to do right now is draw/write

This is one of my favorite toys right now…a fake magna doodle

I was showing off my cute shorts that look like a skirt…and I am not holding on to anything!

Friday, July 18, 2014

Trick or Treating at the Main Campus?

This is going to be a long post.....

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.

Thursday, July 10, 2014

Happy 4th of July!

Since Parma hasn't had fireworks the past few years, we decided to finally go and see some somewhere else. We went to Independence on July 3 with my sister and her family. We had a good time. Avery didn't seem to mind the fireworks. Then we went to my sister's annual 4th of July party the next day. On July 5 some friends of mine from high school had a picnic and then July 6, Avery and I went to the zoo with my friend Karen who lives in South Carolina. We had a busy holiday weekend!

Hanging out with my cousins before the fireworks