Hear, Hear!

Listening to you, I get the music
Gazing at you, I get the heat
Following you, I climb the mountain
I get excitement at your feet

--The Who, See Me, Feel Me

Last Thursday, amongst two night shifts, two trips to the dentist and getting our ducts cleaned, we took Wyatt to the audiologist.  Like many preemie babies (with and without Down syndrome), he was referred for frequent monitoring of his hearing.  Those with DS are watched especially closely as there are a variety of hearing issues that can occur. He's had his hearing tested several times since birth , starting with our first trip when he was 4 months old (corrected).

Hearing issues are a common problem at birth (about 1-2% in the general population).  Many populations of infants are at high risk;  those amongst the highest include the premature, those with lower oxygen levels at birth, jaundice, irregularities of the head and face, infections, low Apgar scores and conditions such as Down syndrome.

Testing infants, as you can imagine, is a little trickier than testing a larger child or an adult that can easily indicate or describe what they are experiencing.  Also, there is the source of the potential hearing loss to consider;  is it a conduction issue or a sensorineural one?  Luckily, there are two different methods to test hearing in the little ones.  Both are automated, non-invasive and do not require the infant to react to anything.

ABR (or BAEP)

The Auditory Brainstem Response (ABR) or Brainstem Auditory Evoked Potential (BAEP) test monitors electrical impulses between the auditory nerve and key portions of the brain.  Electrodes are placed on the scalp and the activity is recorded as a series of clicks are delivered to the infants ears via small earphones placed in the ear.  Using this test, it can be determined what range of hearing the child has. 

OAE

The Otoacoustic emission test  (OAE) measures a sound bounced back from the inner ear and tests the functioning of the cochlea.  An earpiece containing both a microphone and a sensor is placed in the ear and a series of clicks and tones is measured once it has been processed by the inner ear.  Sounds that are required for understanding speech are tested and based on this criteria, the child either passes or fails. 


Wyatt has always passed with flying colours in his right ear, but his left was presenting with some odd results.  During the OAE, we were either detecting fluid in the inner ear or a small depression on the eardrum itself.  This time, as he is older and now able to be conditioned to a stimulus, we had a new test; he was taught that after he heard a sound, a mechanical toy would light up and play for a few seconds in a shadow box.  Tiny microphones, identical to the ones he wore in his ABR tests, were placed in his ears and he was given some toys to occupy his attention when he wasn't being tested.  He loved this test, was conditioned after two tries (!) and passed with flying colours.  So much so that he has been discharged from the high risk program at Erin Oak and will only have to return if we encounter problems (such as suspected damage from ear infections, etc). 

We were happy to get this news;  not only is it one less appointment to worry about, but knowing that his hearing is perfect and speech ready is a weight off our shoulders.  We kinda knew that anyway... That kid could hear a cookie wrapper opening in the next room with the radio on and his brother and sister noisily tearing about the place.  However, now we know his hearing will not hamper his language development.  Which is important, as I long for the day that he can finally say (using a word or sign) "Mama".

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Hyde, M., Newborn Hearing Screening Programs: Overview, The Journal of Otolaryngology, 34:2, August 2005.

Mersch, J., Kibby, J., Newborn Infant Hearing Screening, MedicineNet, 2012

Special Thanks to:

Infant Hearing Program, Mount Sinai Hospital, Toronto.

Erin Oak Centre for Treatment and Development, Ontario.
 

Makin' Progress

Busy, busy...

It has been such a busy week with Team Logan.  We have updates, we have birthdays, we have goals.  We have cupcakes.  What's better than cupcakes?

Wyatt went for his one year hearing test a week ago and did very well on all accounts.  As yours truly was working, Sean had to take both babies by himself.  Wyatt did not have to be asleep for this test (thankfully); I think that would have been almost impossible to achieve. You may remember from the last audiologist appointment that Zoe screamed loud enough to be heard inside a soundproof room.  She stayed true to form and did not disappoint this visit either.  However, despite the not-so-ambient noise from my daughter, the audiologist felt that Wyatt's hearing was within normal limits except for one small area which was inconclusive.  She was unsure as it could have been Zoe's interference and distracting abilities or just Wyatt deciding not to respond to the sound.  Regardless, we took it as good news.

The very next day was their first birthday.  Although I did blog a bit of a retrospective in the morning, the afternoon and evening were spent with the babies.  Lots of pictures were taken and vids were shot.  Both Wyatt and Zoe loved their first taste of cake, which wasn't anything fancy.  For Quinn's first birthday I went all out and made a special no added sugar, no egg thing that tasted vaguely like raisin bread.  This time around I didn't have time (or the desire, frankly) to make anything like that, so instead we opted for angel food cake cupcakes (with confetti sprinkles) and whipped cream.  Naturally, they loved them. 

Babies Eating Cupcakes.  YUM!

Saturday was their birthday party.  Unfortunately, we woke up to a blanket of snow.  That meant that most of our party guests (who were coming from out of town) were unable to make it as they were pretty socked in.  It's February.  In Canada.  What can you do?  We still had a great time with the few that did come and the babies were thoroughly fêted.   

Aside from cake, they've explored quite a few new foods and textures lately.  Both are crazy about cheese (cottage and cheddar) and were treated recently to their version of mac n' cheese (just don't tell them it has pureed cauliflower in it).  They've attempted very small pieces of cooked broccoli;  Zoe was nonplussed while Wyatt thoroughly enjoyed it.  That is, until I discovered that he was just stashing it in his high palate.  Pancakes, raspberries, watermelon... and the list goes on.  The biggest change in their diet this week has been switching them from formula to homogenized milk.  They are still breastfed most of the time, but their diet was supplemented with formula when I was at work and with a small "top up" at night.  That has been switched out to milk and thankfully, everything is well so far.  Next up:  eggs.

At our session this morning, we discussed future goals with Wyatt's therapists.  At six months, we hoped that by this time Wyatt would be sitting independently (while bracing himself), propping himself up on his hands while on his tummy, pivoting while in that position and starting to commando crawl.  As of this morning, he can sit up independently while braced for 5 minutes (and without bracing for a short period of time).  He props himself up on his hands while on his stomach and can pivot slightly less than 90 degrees.  His rolling has improved to the point where he can log roll non-stop and in both directions.  He is not crawling, although he did demonstrate a little "going backward" today when he was trying to reach for a toy (and was able to "push off" of his worker's hand and slide forward to reach his goal).  Everyone is pleased with his progress overall.  Today we set new goals:  Hands free sitting, pivoting 90 degrees, backwards or forwards commando crawling and feeding himself more independently.  The last is a bit of a tricky one as he is quite content to grab a handful of my hair or another foreign object and put it in his mouth but not food.  He picks his solid food up, plays with it, but if he eats it, generally it is because we are putting it in his mouth.  I think it's just a matter of proper motivation, as I turned my back for a second on Saturday to help a party guest with something and turned back to find this:

Wyatt's Ninja Noms

No one can resist a cupcake.  No one.

Slowly and carefully, Wyatt is developing, albeit at his own speed.  He is strong and healthy and continues to delight anyone in his presence.  At one year in, we know we are still new at this;  it will probably get a lot harder as he grows older.  Right now we are progressing and that deserves to be celebrated.  Quite possibly with cupcakes.

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I've also done a guest spot on "Life with Penis People" this week.  Stop by, say hi to Danielle and read my post "A Little Longer and a Little Different".  You won't be disappointed.

Hearing Complications with Down Syndrome

Not only does hearing allow us to experience the sounds around us, but it plays a major role in the development of speech. Children with Down syndrome can have a variety of hearing issues, both congenital and acquired, which if not treated can lead to greater problems.

Congenital disorders of the ear generally involve a sensorineural issue (whereby the sensory information is not transmitted or received by the auditory nerve properly). Often this involves the higher tones and is therefore not discovered until later on (as the child would continue to hear many of the sounds around them) and would therefore impact on their development (especially with speech). Routine screening allows for the discovery of congenital ear disorders. Down syndrome may affect any or all of the structures in the middle and inner ear.

Acquired hearing disorders can be divided into two categories: conductive hearing loss and sensorineural hearing loss. These can occur separately or together; many children with Down syndrome have a mixture of both.

A build up of cerumen (ear wax) can easily interfere with the functioning of the eardrum. If mobility of the eardrum is decreased, the sounds transmitted to the middle ear will be decreased as well. This is easily treated by a variety of measures including drops and suction removal by a qualified professional.

Those with Down syndrome can be more susceptible to more infections than the general population and as a result have a higher incidence of ear infections. Over time and especially if left untreated, these infections can cause damage. Fluid buildup in the middle ear, a ruptured tympanic membrane (eardrum) and difficulties with the ossicles can all result from infection.

As well, a condition commonly referred to as "glue ear" can develop. Sticky mucus can accumulate in the middle ear which can literally encase the ossicles and prevent them from vibrating (and therefore, transmitting sound). People with DS can produce more or stickier "glue" which frequently becomes infected as it does not drain away. Further hindering drainage is overall smaller Eustachian tubes in those with Down syndrome as well as the tendency for these tubes to be sharply curved.

With both of these conditions, antibiotics are most often prescribed. If the fluid or glue buildup is persistent, the child may have to undergo a tympanostomy and have "tubes" or grommets placed in the eardrum to allow the fluid to drain away.

As with any potential problem, early intervention is the key. Have your child assessed early by a trained audiologist and your medical team to prevent and minimize the chances of long term hearing loss.

"Anatomy of the Human Ear" shared with permission by Perception Space-The Final Frontier, A PLoS Biology Vol. 3, No. 4, e137 doi:10.1371/journal.pbio.0030137. Creative Commons.

Can You Hear Me Now?

This week's "doctor adventure" for the family involved taking Wyatt to the audiologist.  He was screened (as was his sister) in the NICU, but due to his Down Syndrome, he has a follow up regimen set out by Infant and Child Development.  This was his four month (corrected) appointment.

Since the "little extra" can affect all body systems, hearing is no different.  Kids with DS often have hearing issues that are congenital or acquired.  Most acquired hearing loss is due to ear infections, but wax buildup and a lovely condition most commonly known as "glue ear" (where gunk in the middle ear literally glues up the tiny bones and prevents them from moving) can also occur.  After our last trip to the ENT we were unsure as to whether there was any fluid accumulating in the middle ear (as he could not physically see the eardrums).

After arriving late (I can't remember when I was actually on time for anything since these babies have come along), we were shown into a tiny office with a tinier sound proof room off to the side.   We were cautioned during the confirmation phone call that Wyatt would have to arrive awake and then be able to fall asleep for the testing.  I thought at the time "good luck with that...", but I did my best to keep him awake on the bus ride to to the office.  Once there I took him out and bounced him around a bit (which made him smile that anime smile) to keep him from dozing off before we were shown into the little soundproof room.  I abandoned the stroller in the hallway, set Zoe in her car seat on the floor at Quinn's feet and Wyatt and I took our place in the chair in the booth.

I'm really not good with small spaces... especially ones that remove all sound (I find the silence very unsettling, and well, loud actually).  Even with the door open and a giant window, it still felt like an execution chamber.  However, I wrapped Wyatt in the quilt that his Grandma made him and got him prepared for his test.  First they cleaned and prepped [read:  roughened up] the areas for the leads and put them on.  He had a lead behind both ears and two on his forehead.  He hated this and he was pretty annoyed at all the pushing and prodding, but he completely lost it when she had to rip one of the leads off and start over behind his left ear.  Now that he was howling, she disappeared, letting me know that I should send Quinn out when Wyatt was asleep.  Whatever you say, cupcake...

He spent the next 10 minutes fussing.  Since his ear now hurt, it must have reminded him that his mouth hurt (both the twins have teeth on the way) so he was also chewing on his fingers... which also hurt.  I sent Quinn out to get the backpack, whipped out the Baby Tylenol and gave him a shot.  5 minutes later he was snoring and we could start the test.

The audiologist almost woke him up when she jammed the first tube in his ear, but he settled down again as I held my breath.  I say tube, but in reality it was a tiny speaker that delivers a series of clicks and tones that correspond to specific frequencies.  They test a large range and are particularly interested in the high end as these are the tones that tend to be affected first.  It was also explained to me that she would be paying particular attention to the low end as well;  the low end of the spectrum would indicate if there is fluid accumulation in the ear (which would have to be dealt with as soon as possible to prevent future problems). 

She had to do two more tests on him afterwards due to the results of the first, however in the end his right ear is perfect.  She stated that his left ear had some odd results that could be attributed to a small depression in the eardrum itself, or possibly the tube wasn't in far enough (remember, he has very small ear canals).  In any event, there was no concern for any long term hearing loss (as it stands now) and we would be retested at one year of age (corrected).  Fantastic.  There was also no sign of fluid in the ear, which was also a relief.  It was also pointed out to me that no matter how loud Zoe got, she would not contribute to any hearing loss at Wyatt's part.  Which was also great news as I got to watch the audiologist wince as my daughter's screaming could be heard through the walls of the sound proof room.

Such good news (and such good behaviour on Quinn's part) earned us a trip to Dairy Queen before we headed home.  Yum!  It was hot, so both babies slept until we reached home, which allowed Quinn and I some time together.

As I mentioned last week,  I can now cut out the extra calories (for the babies... did you think I was going to mean me??)  At this point, we've dropped the formula and are just giving EBM bottle top ups.  I'm not seeing any changes in them so I plan to start doing the bottle top up every other feed and then hopefully drop it once and for all.  Wyatt's head is getting steadier every day as well, so that brings us closer to starting solids soon.  I'm back to work in just over a month and I hope to have them started on some cereal at least (they will be getting entire meals by bottle when I am at work anyway). 

This week also meant the babies had to learn to sleep alone.  We've been really worried about this actually, since they have slept so well cuddling into each other.  Lately however, they've started disturbing one another and are getting too big to sleep across the crib.  Last Saturday we moved their room around and set up their very own spaces.  I lovingly set things up so that they each had something of the others with them.  I went to bed with one ear open, waiting for the inevidable wailing to start.

It didn't.

They had the best sleep that they have ever had.  They haven't slept like that since, to be honest, but they slept that night for sure.  Now when Zoe wakes up every hour or so, she isn't necessarily waking up her brother (just me).  Which is a good thing as Wyatt needs his rest.

More good news... it is always welcome around here.  We still step cautiously and take nothing for granted with the kids, Wyatt especially.  However, with each new smile, with each little chuckle, he is progressing.  Yesterday I got to see him waking up and when he saw me standing beside him, he smiled broadly.  That was a fantastic moment.  Tonight after dinner, when he reached out for Quinn who was sitting beside us... that was another fantastic moment.  We are slowly skipping from moment to moment with him as more of his personality comes out and he becomes more of the person he will be.  He studies our faces as we make sounds at him and he tries so very hard to mimic them back.  He 'talks' to us in a series of babbles and coos that are unique to him, including one that sounds like "Hi-lo" that he says a lot when he sees us.  Just his way of saying "hello", we guess.  There is progression; it is slow.  It's slowness serves to illuminate each of the new things that much more, to put it in the spotlight so that we can appreciate exactly what an accomplishment this particular thing really is.  Each new thing is so marvellous, so special, it is almost a gift.  A smile here.  A purposeful touch of my face there.  Gifts.  Each and every one.

Every single day.

We read you loud and clear, little man.



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