Luke’s Story – Update

– Luke had a sedated MRI and CT of his brain and inner ears.  The doctors confirmed his schizencephaly, but said that it isn’t the reason for his hearing loss.  There were no other structural abnormalities that would explain the loss.  This wasn’t a shocker to us, just confirmation to what we already knew.

– Luke began (and completed) the summer school session at Moog, attending classes two mornings a week.  We noticed an immediate improvement in his speech and communication – like a night and day difference.  Even his teachers at daycare noted the change.  Luke has become quite the little chatterbox.  He’s saying so many words, and attempting even more.  His babbling has taken off and we’ve noticed less whining as a form of communicating.  He is still struggling with two word combinations (noun-noun), but we are getting there.  The transition was really tough for Luke (changes in routine seem to hit him pretty hard), but he is thriving at Moog.  We couldn’t be happier with his progress.  Luke will be attending classes two mornings a week once the school year starts in September.

First day of school!!

– Luke’s hearing tests continue to be steady.  Megan, his audiologist, continues to expand the ranges that are tested and retests known frequencies for verification.  This past month, she was able to begin testing his hearing perception.  She is able to assess how well he can understand what is being said, rather than how softly he can detect sounds.  She started by placing four toys that had different length names ( ball, cookie, airplane, and ice cream cone).  Luke had to pick the toys as they were being named by utilizing the length of the word.  The next step was to use objects that all had two-syllable names (bathtub, airplane, hot dog, french fries).  Luke had to decifer between the consonant sounds to determine the item that was being said.  The last step was to use four objects that all started with a ‘B’ and were similar lengths (bird, ball, bed, bat).  Luke had to pick up the vowel sounds in order to know what object was being said.  These were all tested using both hearing aids together and Megan’s voice.  He scored 12 out of 12 in each set!  The next step is to test each hearing aid individually and use a recorded voice rather than his audiologist’s.  All-in-all, he’s doing amazing!

– We had our regularly scheduled IFSP meeting to update Luke’s plan.  He’s been approved for classes at Moog two mornings a week, therapy at home twice a month, parent education (at Moog) once a month, and mileage reimbursements for our trips to Moog (because I was approved as a First Steps provider).  We also had our 6 month appointment with Dr. Forsen, Luke’s ENT.  Dr. Forsen was happy with the results of the scans and with the course of ‘treatment’ Luke is receiving from Moog.  There’s nothing that he can do for Luke’s hearing loss, but an ENT technically has to ‘oversee’ the whole process.  He’s also monitoring Luke’s PE tubes.  He cleaned some wax out of Luke’s right ear and sent us on our way for the next 6 months.

At the ENT’s office – such fun chairs.

– It’s been a little over seven months since Luke was diagnosed.  Honestly, I can hardly believe it.  It feels like an eternity has passed in a blink of an eye.  Once Luke was diagnosed, a whirlwind of activity started to get us on the track we are on (you can catch up on everything here).  In six short months, Luke was enrolled in First Steps, we toured three schools for the deaf and picked our school, a hearing aid trail was started and was deemed successful, hearing aids were ordered and worn, Luke was enrolled in classes, and transportation was arranged for him to be able to attend.  On top of all of that, we’ve had a smattering of different doctor’s appointments, learned of his schizencephaly, devoted hours of time on speech therapy at home and at his school, and went through three sets of earmolds that had to be measured and fitted.  We learned about Luke’s hearing loss, how to care for his hearing aids, how to deal with the looks and comments in public, how to alter the way we communicate with Luke, and how to encourage him to speak.  Basically, we’ve learned to tread water in the ‘hearing loss pool’ in a relatively short amount of time. Thinking about these past few months, I feel like we’ve somehow managed to keep it all together.  But, it has been stressful.  Really, really stressful.  While necessary, it has been a disruption to our routine.  The appointments and meetings and therapy sessions take time to coordinate and attend.  The massive influx in information has been an undertaking to process in order to effectively use it.  Meanwhile, the reality that our child is going to have to deal with being hearing impaired for the rest of his life, and everything that means, has really sunk in. These past several months, we’ve done our best to just keep our head above water.  It’s been extremely stressful.  A combination of stress eating and pushing exercise aside has resulted in us both gaining weight.  I know at some point this craziness will become our new normal.  We will adjust with time.  We will figure it out, we always do.  For now, all we can do is ride this crazy ride we are on and pray that we can hold on.


2 thoughts on “Luke’s Story – Update

  1. It’s amazing how quickly he started talking more after he started at Moog! You guys are amazing and are doing all of the right things!

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