Sunday, January 26, 2014


Wow! It's been a while. Finn's been busy growing, and we've been busy chasing him around! We would like to take the time to update all of you on our little miracle.

He's currently 21 months old (1 year, 9 months old) or 18 months (1 year, 6 months) adjusted. He's about 25 pounds and 2 and a half feet tall. For the past 9 months or so he has been seen by 6 different therapists for early intervention services (physical, occupational, speech, feeding, and developmental therapy and aural rehabilitation therapy). He was released from his cranial orthotic (helmet) in October which was meant to help shape his flat head. He had ear tubes put in in April and then had another set of more permanent ear tubes put in in October. He continues to be followed by his neurologist, neurosurgeon, urologist, pediatrician, and ophthalmologist every 6 months whereas he sees his audiologist and ENT more frequently. 

This past week, we met with all of Finn's therapists and his Early Intervention case manager to discuss his progress and to set new goals and strategies for continued progress. Since evaluations only happen yearly (and this was a 6 month "check in"), his therapists offered a summary of his skills and an estimated age level without a full assessment. This is a "brief" overview of what happened:

Physical Therapy: Finnegan is crawling, pulling to stand, cruising furniture, and climbing up and down stairs. The goal is to get him standing and walking independently; however, Finn's foot placement is off. To remedy that his physical therapist recommended orthotics for his shoes. These small shoe inserts have not seemed to help, so we will likely move to more "intensive" orthotic. He seems to be consistently behind in his gross motor skills; but he is making a lot of progress! He made about 6 months of progress in the past 5-6 months! Due to his continued progress we decided to decrease his physical therapy sessions from 4x a month to only 2x a month. 

Developmental Therapy: Finn continues to have strong play skills. The main concern for him in the area of developmental therapy is imitation and sound/word development. Developmental therapy will continue to take place 2x a month. 

Feeding Therapy: Finnegan has gone from monthly visits with his feeding therapist to now being only monitored by his feeding therapist! This means he will see her every 3 months to check on how he's doing. He's tolerating most table foods and is able to bite off a piece of food to eat. We are working on his ability to feed himself with utensils, and so far he doing quite well! He is chewing well and his homework is to continue to practice by eating... My, what a life.

Occupational Therapy: Finn continues to excel when it comes to fine motor/visual motor skills! His occupational therapist has also introduced us to a new opportunity to help Finnegan with fine and gross motor skills as well as speech! She conducts a weekly play group with a speech therapist in town. It incorporates a theme with classroom time, songs, activities like obstacle courses and scavenger hunts, and free time! We are really excited for a new type of therapy session and to see Finnegan interact with his peers! This also means dedicated OT sessions will only take place once a month, but will be supplemented by the weekly group sessions.

Speech Therapy: Since his last evaluation six months ago showed a deficit in receptive communication (understanding/listening), Finn's speech therapy increased to 2x a month from 1x a month. Since then, both his speech therapist and aural rehabilitation therapist have focused on helping Finn understand what he's hearing as well as to make new sounds and words. Right now, his scores for receptive and expressive communication both came in at around 18-20 months, right between his adjusted and actual age; however, he made more progress in receptive than expressive communication skills over the last 5-6 months. The good news, is that the focus on the receptive skills paid off! He will continue to see his speech therapist 2x a month.

Aural Rehabilitation: Finn's aural therapist is a part of a clinic in Urbana that specializes in hearing issues in children. It is called ECHO (Expanding Children's Hearing Opportunities). We are fortunate enough to have her traveling out to visit Finn for therapy 2x a month. We work a lot on listening, understanding, and sound development. His auditory skills were at an 18 month level (not too bad!). His receptive language skills were at about 14-16 months and his expressive language skills were about 12-14 months; however, he is making a lot of progress! He will continue to see his aural rehabilitation therapist 2x a month.

Now, we would like to give you a bit of an update on Finnegan's hearing. Two weeks ago we went for his regular three-month appointment at Carle's ECHO (Expanding Children's Hearing Opportunities) program in Urbana. It is where we have been going ever since Finn came home after having had meningitis. Their program coordinator is Finn's audiologist, and she has been wonderful with helping Finn have a better hearing experience and at educating us on what it all means.

When Finn was born, he did not pass a pass/fail hearing test in his left ear, and some initial testing after his NICU stay was also inconclusive. Then he went back into the hospital for meningitis, which among other things, can have a devastating effect on hearing. Towards the end of that stay, some testing again showed that his hearing wasn't normal in his left ear (right ear was fine, and today remains fine), but still inconclusive and they recommended followup with an audiologist.
Finn's therapy through EI (early intervention) picked up speed again, and focused mostly on physical therapy and occupational therapy; though we also saw more infrequently a developmental therapist, a feeding specialist, and a speech / language pathologist. At that early point, Finn was not speaking, but was not expected to. He was demonstrating the precursors to speech just like he needed to.

We followed up with an audiologist in Bloomington who after testing said their equipment was not specialized enough to give the answers we needed, and recommended us to Carle ECHO for an ABR (auditory brain-stem response) test. That test, which just involved Finn sleeping while I rocked him in a chair and having a few probes placed on his head, gave us an accurate report of his hearing. The result was that he had moderate loss in the low frequencies rising to moderately severe loss in the higher frequencies. While a giant bummer, this was correctable with tiny hearing aid. They also said that Finn needed tubes.

We gave the tubes a go for a bit and re-did the ABR, but the testing still showed the same, so we went for the hearing aid. Over the next few months Finn moved in and out of phases where he would tolerate having the hearing aid in, to having an ear infection, to needing new molds because he grew and they would leak sound and eventually fall out, to yanking it out all the time, or it wouldn't fit right for him - to loving it! There were a couple weeks where he would ask us to put it back in when we took it out for bedtime - so cute. When we would go in every three months to do a followup set of testing in the sound booth, Finn wasn't exactly playing along, though no child that young ever really does, so it was hard for the audiologist to accurately tell how his hearing was. When Finn did cooperate, the tests showed similar results to the ABR test.

Well, two weeks ago, he was very cooperative in the tests, but unfortunately showed poor but valid results. Whereas he had been at moderate loss in the low frequencies rising to moderately severe loss in the higher frequencies, he was then at just over the line into profound loss for the lowest of the lows rising up to severe loss in the mid and high frequencies. The audiologist theorized that a few weeks back prior to getting his latest mold which he loved, when he was removing the hearing aid every few seconds, that a drop in his hearing occurred, and that might have been him telling us something had changed for him.

For a bit of explanation, the loss scale goes something like normal>moderate>severe>profound, and when I say "rising" that means rising up the frequency chart from lows to highs.

Not long after that last appointment, Finn started tearing out his hearing aid with great frequency again, and when we went back in today, we found that his hearing had dropped yet again. Finn now has profound loss in his left ear, but his right ear appears to still be in the normal range. Unfortunately Finn wasn't very much into playing the games in the sound booth today, so that was harder to accurately measure.

What does this mean? It's not a complete loss in his left ear. He seemed to respond to quite loud speech better than he did the tones or bone stimulation, but at that level, his right ear, despite the masking noises, was possibly assisting him.

Next, we will re-test in a couple weeks to verify the results from today, and we will consult with an ENT who specializes in pediatric hearing loss to get to the bottom of what is causing Finnegan's hearing loss. While we thought there might be nerve damage that he always would have had, or from prematurity, or from meningitis (which can cause a delayed loss), the signs are now pointing at a structural issue instead. That investigation will probably take the shape of some sort of imaging and the likely outcome will be that the ENT recommends a BAHA (bone anchored hearing aid) which functions by a microphone in an external device converting the sound into vibrations that are passed to his bone and picked up by the hearing nerves of the good ear, which sit in the bone, and also results in a sensation of hearing in the bad ear, which for Finn will make it seem like he has hearing in both ears. Another possibility is something called a sophono which functions in much the same way.

The good news is that there has been an amazing ramp-up in the development of assistive listening technologies in the past year or so that shows no sign of stopping soon. Quality is rising dramatically, new technologies are being clinically tested, and everything is shrinking.

Prayers of thanks that Finnegan retains normal hearing in his right ear, continues to make advancements in hearing and speech goals, and for the timely technology boom are appreciated.