Call it an early new year resolution with a plan to continue into 2015. I got some of the summer snapshots up, but I have to back track to the Spring of 2014 before our lives turned upside down.
Aaliyah and Jocelyn were scheduled for their early childhood screening. We walked out of the building with a two failed vision tests and one failed hearing test. Jocelyn had a follow up with our ENT Dr at Park Nicollet who verified Jocelyn had a hearing loss in her left ear. Since we were in the dark on what was going on with a future of multiple tests and prodding we were sent to the University of Minnesota Lion’s Hearing Clinic. A one stop shop. Appointments scheduled for May.
And no we did not notice their vision or Jocelyn’s hearing loss. Jocelyn’s speech has always been great and she is spot on developmentally. Unilateral hearing loss comes with its own set of challenges. Brett’s cousin’s daughter also has unilateral hearing loss and she created a video to explain what our girls experience. Watch it!
Jocelyn had her first appointment at the Lion’s Hearing Clinic where she saw a pediatric ENT, Speech Language Therapist, geneticist doctor, and an Audiologist. The hearing test confirmed that all previous tests were accurate and Jocelyn had a moderate to severe hearing loss in her left ear. A CT scan and blood draw was ordered for Jocelyn. Confession…I was very nervous for these tests even though I have seen and aided several other children through them. Even though I am a Certified Child Life Specialist, I cowered at the thought of my little girl having to endure the next phases. Regardless of my training and knowledge that kids are tougher than nails I wanted to put her in the car and drive home. After I returned to reality I called in the reinforcements, my Child Life friends at the U of M. My past Children’s volunteer, Carin, assisted Jocelyn for her CT scan (and on a later date a ultrasound) and another Child Life Specialist in the lab. Luckily Jocelyn is obsessed with iPad’s so we went with a visual barrier and she didn’t even flinch. Jocelyn’s CT scan showed she didn’t have a normal cochlear nerve. More to come on this.
Later in May 2014
Both girls went in for vision tests. Final results, they both are near sighted (thanks Mom) and have an astigmatism in one eye (thanks dad). Aaliyah had a greater preference for one eye so the pediatric optomologist ordered up some glasses for her and asked for them to come back in one after 6 months.
Later, Later in May
Late one night, I heard a thump in the girls room. Aaliyah had fallen out of her bed. In the middle of the night she asked me to put her back in her bed, but the next morning she said she couldn’t move her arm. That morning we headed to Children’s hospital in St. Paul to find out she broke her clavicle. 6 weeks of an arm sling. She did a great job on her recovery.
Thanks to my Child Life friends for sending Aaliyah home with a a medical play kit.
And than later, later, later in May 2014
Aaliyah’s glasses are in!
June 2014 (thank God May is over)
Jocelyn gets fitted for a hearing aid.
Jocelyn had a mold made of her ear for the silicone insert. She got to pick the color. We opted to borrow her first hearing aid through the Lion’s loaner program. The professionals did not know how much she would benefit from a hearing aid.
Later in June
Jocelyn got her hearing aid. After several tests and hearing aid calibrations we left with a very expensive device that we hoped would help Jocelyn hear more in her left ear.
There is a little learning curve on putting it in and even more difficult to remember we needed to take it out. Jocelyn tolerated it very well which the audiologist commented on several times.
Later in July
Since the CT scan showed Jocelyn’s cochlear nerve abnormal, we opted to do an MRI. However, an MRI for a 4 year old requires sedation which means IV. Called in the soldier, Child Life Specialist and long time friend, Amy Wynia.
Results of the MRI finally came in. Jocelyn did in fact have a cochlear nerve, but it is smaller than normal. No one knows why. The smaller nerve does not make her a candidate for a cochlear implant but technology continues to change. So we opted to stick with the hearing aid and ordered her very own model.
Later in August 2014
A quick stop at the Hearing Clinic to get Jocelyn’s hearing aid.
Later, Later in August
Jocelyn and I did several appointments over the summer with District 196 for testing. The deaf and hard of hearing team have her in the system. Jocelyn received an IEP (individualized education plan). The deaf and hard of hearing coordinator visits Jocelyn once a month at preschool. They will continue to follow her until graduation. This team has assured me that Jocelyn will not fall behind. She is in their sight and they will investigate all options to ensure Jocelyn is getting the most out of her education.
We had boys get their vision tested. The doctor’s were not sure they passed their test.
We finally get Jocelyn’s genetic testing back. Jocelyn has the TECTA mutation. The TECTA mutation is associated with unsyndromatic hearing loss. They asked me to get tested, but really thought my mom should get tested. Why….well, because my mom lost hearing in her left ear in January. Mom did get tested and her results were the same. She had the TECTA mutation. The medical team could not tell me 100% if I (and Aaliyah) had the same mutation, but science would say that we do. I decided not to do the testing because it wouldn’t change anything for me (more to come) and since Aaliyah and Jocelyn are identical we can assume she has it.
Later in October 2014
Aaliyah went in for a hearing test and her results were normal. Note, just because you have the TECTA mutation does not mean you will lose your hearing. Many people have gene mutations that never activate.
I went in for a hearing test and results were not normal. They weren’t horrible but I do have a hearing loss in middle tones. I explained my story to the audiologist before the test and when she explained my results she said my loss is consistent with genetic hearing loss. Her recommendation was that I get tested every year in addition to Aaliyah. The boys and Brett were also to get tested.
Later in November 2014
Ethan, Bennett, and Brett go in for hearing tests. Results all normal. I guess Brett just has selective hearing.
Jocelyn and I just went in for her check up. For the first time I saw her get frustrated with her hearing loss. She struggled with identifying the words and finally recognized what was going on. We made it though the tests. We opted to keep the hearing aid. There was talk about other options some more permanent. We decided she needed to be older to participate in making the decision. In the meantime, we will keep going with what we have. The audiologist didn’t say she has an increase of hearing in the left ear, but has not gone backwards and in a few areas has a small increase. We will not return to the Lion’s Hearing Clinic until the spring. Once year after all this started.
I feel fortunate for living in an area that has great and specialized healthcare. Our travels have been easier with everyone by our side. Thanks to everyone who helped during appointments and learning about her hearing loss. Big picture…Jocelyn is a very healthy and happy 4.5 year old!