Luke’s Story – Getting Started

When Luke was diagnosed by the pediatric audiologists at Mercy, they recommended that we get an appointment with Luke’s ENT to have him seen regarding his hearing loss.  Luke had a history of ear infections when he was an infant and ended up getting tubes when he was 8 months old to finally shake them.  For his ear infections and tubes, we saw Dr. James Forsen at Mercy Hospital – he came HIGHLY recommended (I’ve been told by several physicians that Dr. Forsen and his practice are the best ENT’s in St. Louis).  We really enjoyed working with Dr. Forsen for Luke’s tubes, so it was a no-brainer to go to him for Luke’s hearing loss.  If we have to have a long-lasting relationship with an ENT, Dr. Forsen was our top choice.  I booked the first appointment he had available.

We saw Dr. Forsen the first week of January.  He verified that Luke’s loss wasn’t from his history of ear infections or the tubes (a loss from those things would follow a different curve).  Dr. Forsen is guessing that Luke’s loss is genetic in nature because of the family history.  However, the only way to completely conclude that would be to do genetic testing.  The testing is expensive, and not covered by insurance.  Plus, the results would only confirm what we already know and would tell us the chances of any future children having this same issue.  Knowing there’s a chance of hearing loss isn’t a reason that we would choose to abstain from having more children, so there is no need for the genetic testing at this time (as far as we are concerned).  Because Luke’s loss is sensorineural, Dr. Forsen wants to do an MRI and CT scan of Luke’s head and inner ear to ensure that all the structures are sound.  Luke will have to be sedated for the scans to be performed, so Dr. Forsen is going to have us schedule this after our next appointment with him.  He also insisted on having Anna’s hearing tested again to ensure that her hearing is normal.  It has since been tested again and she passed – she will continue to have hearing tests every 6-12 months.  Also, Dr. Forsen explained that the cells that make up the ability to hear are extremely similar to the cells that make up the ability to see.  Because of this, he asks any patient with a sensorineural hearing loss to have their eyes checked as well.  He referred us to Dr. Steve Goodrich.  (Luke has seen him, and everything has checked out so far.)  Dr. Forsen explained that he would ‘oversee’ Luke’s hearing loss, but would defer to Moog for testing and aids.  Luke will visit Dr. Forsen every six months, or sooner if his loss progresses.  Before we left, Dr. Forsen wrote a prescription for hearing aids.  (Sidenote – I had no idea that you needed a prescription for hearing aids!)

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During the same week we met with Cassie Club, our Missouri First Steps Service Coordinator, to have our intake meeting.  Honestly, I had no idea how the First Steps process worked or what to expect.  Cassie explained that at the intake meeting, we ‘signed up’ for First Steps.  Luke automatically qualified, so it was a matter of filling out some paperwork and discussing the next steps.  For us, we knew that we wanted to go with Moog as our school for services.  Cassie explained that First Steps will pay for the vast majority of services and equipment for Luke.  Families owe a maximum monthly amount based on income.  For instance, the maximum we would owe for any given month is less than $50 – but that’s only if services for that month add up to the maximum.  We will never owe more than our capped monthly amount.  Pretty amazing if you think about how much the total cost ends up being.  To give you some perspective, a set of hearing aids is around $5000, therapy is several hundred dollars, and equipment for the aids and new ear molds add up to around $1000 – and that doesn’t even touch the cost of the audiology visits.  First Steps helps with everything. Amazing! Cassie explained that the next step would be to coordinate a meeting with our staff at Moog to discuss our Individual Family Service Plan (IFSP).

The following week, Luke had his initial testing at Moog.  We met his audiologist, Megan Cahill, and his Teacher of Deaf, Laurie Preusser.  (I have to clarify – Luke is not ‘deaf’, but teachers who help hard of hearing children learn to talk are called ‘Teacher of the Deaf’. He doesn’t use a speech therapist because nothing is wrong with how he’s forming words or the structure of his mouth. It took me a little while to figure out the difference.)  To conduct a hearing test with a child that’s Luke’s age, someone has to sit in the booth to help redirect his attention and gauge his reactions.  Laurie sits in the booth and interacts with Luke while Megan sits outside, runs the sounds/reward toys, observes, and records the results. Megan also looks at Luke’s eardrums, does a test to determine if the tubes are open and working (ie letting sound pass), and checks Luke’s otoacoustic emissions (OAEs).  OAEs are sounds that are given off by the inner ear when the cochlea is stimulated by sound.  When sound stimulates the cochlea, the outer hair cells vibrate and produce a nearly inaudible sound that echoes back.  (This is the test that they do as the newborn hearing screening when a baby is born.)  Individuals with normal hearing produce these echoes, or emissions.  Those with a hearing loss that is greater than 25-30 dB will not.  As of now, Luke has passed his OAE tests. Once Megan was finished with all the tests, she explained that the results confirmed what we already knew – Luke has a hearing loss.  I asked her what she recommended and without hesitation she said that he needs hearing aids.  We were prepared to hear that, and agreed.

With that, Megan began the process of taking impressions of Luke’s ears for earmolds.  A child’s ears will continue to grow until they are around the age of 9.  Because of this, children can’t wear hearing aids that sit in the ear canal – you would have to constantly buy a new set of hearing aids as their ears grew.  Instead, they wear a behind the ear aid that is attached to an earmold.  The earmold is made of hard plastic that fills the ear canal and inside ear.  The earmold allows for extra support for a child wearing a hearing aid and longer use of the aids.  As the ear grows, new molds are made and used with the existing hearing aids.  What I didn’t realize about earmolds is how much fun they can be!  Megan handed us a bag of color chips and told us to go crazy.  Molds can be up to 4 colors in different patterns.  We can do swirl, camo, dots, and stripes – you can even add glitter if you want.  (Alex has already informed me that I am not allowed to put glitter in Luke’s molds.)  We went back and forth over the colors and design. In the end, I told Alex to pick Luke’s first set of molds – I figured it would be a little bit of bonding for my boys.  The second set is all mine, though, and I’d be lying if I said that I haven’t already thought of what I’d like them to look like. The impressions had to be sent out so that molds could be made, a process that takes two weeks.

A few days later, we sat down with Cassie to have our IFSP meeting.  Our team from Moog was there.  In fact, they have told us that they should be at all meetings in order to best advocate for Luke and the services that he needs, which is completely fine with us.  We aren’t the experts – why not have the people who know what they are talking about fighting for us?  It just makes sense.  And here’s where it gets twisted, with IFSP meetings (or IEP meetings later on) you want to answer the questions in a certain way so that your child receives the services they need.  An IFSP meeting is not the time to brag about how your child is killing it in the milestone department.  Anyway, an IFSP is a plan for special services for children under the age of 3 with developmental delays.  The plan is developed with a service coordinator (Cassie) to identify the support and services that will aid the child’s development.  The plan includes an assessment of the child’s present developmental level (found by asking a ton of what seems like random questions), a statement of goals that are targeted toward the family or what we would like the outcome to be, and the services that will be used to achieve the goals.  This meeting will happen every six months, or earlier if needed, so that the IFSP can be updated.

Luke’s first IFSP meeting took about an hour.  Basically, we explained that Luke is currently on track and we wanted to keep it that way.  We are in a critical point of his language development, so therapy is a must for him to learn to speak correctly.  All parties agreed that Luke will get three hours of speech each month – one at home, one at daycare, and one at Moog when we are there for audiology.    We are concerned about the possibility of Luke’s loss progressing.  At this point, his line of hearing doesn’t match (and isn’t as bad) as Alex’s.  If Luke inherited his loss from Alex, reasoning would tell us that Luke’s loss will develop into something similar to the loss that Alex has.  Because of this, his audiologist wants to monitor him very closely so his hearing aids can be reprogrammed if his loss changes.  Luke will have a hearing test once a month.  Also, it was agreed that Luke needed hearing aids (and that First Steps will provide them).  Initially, he will wear loaner aids until Megan feels comfortable ordering a set for Luke.  With the hearing aids comes all the equipment needed to maintain them – batteries, de-humidifier, drying bricks, cleaning supplies, battery tester, a clip/cord retention device, and the list goes on.  Luke was approved for everything, so all that was left was to wait until his first set of earmolds made their debut.

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