Update

I believe my intention was to update this blog periodically but it never became a habit.  It occurs to me that someone out there not immediately connected to our family might wish for an update. Both E and O are healthy.

Thanks for checking in!

Hearing Aids to Come

Here is what we know at this point:

• O is growing well.  He continues to drink Mommy's milk thickened with some rice cereal. 
• O is a social little one and loves smiling faces.  
• The sleep situation in the home is slowly starting to improve.  We're hopeful to rid ourselves of the apnea monitor very soon, which should help. O has not had any breathing difficulties.
• O will need a hearing aid for the next few years (at minimum).  He will see the audiologist sometime in the coming weeks to receive this.  He'll need a special conduction type of hearing aid.  (His hearing loss appears to be mostly conductive in nature due to very small external ear canals.)

O had another appointment with his ENT doc today.   O had a CT scan to look more closely at the structures in his ears.  His inner ear parts are all present and accounted for.  This brings hope that his hearing will be relatively normal with the assistance of a hearing aid and that one day in 5-6 years, he'll be a candidate for surgery to correct the small ear canals.  Right now, he's too little for that type of undertaking.

We look forward to seeing how O responds to noises once he's wearing the hearing aid.  He clearly hears some sounds without an aid.  For instance, when he is crying he definitely calms if you sing into his ear like it's a microphone.    The volume at which his brother speaks (or whines) at times presents a minor dilemma: When is it OK to turn the hearing aid off so that big bro won't wake O up (or prevent him from going to sleep)?  We'll have to ask the audiologist for advice on that one.   It's been sorta nice to not have sounds interfere with baby-sleep. 

Mixed News

About ten days ago, O pulled out his NG tube.  At that time, he was taking nearly his entire volume goal of milk by mouth.  We decided to leave the tube out and fortunately, we have not needed to re-place it since he's eating very well by mouth and continues to gain weight on target.  We're still thickening the milk with some rice cereal.

O is acting like a normal two-month old in many respects.  He is exploring the world with his eyes, making great eye contact, smiling at us, and even seemed to "coo" a few times this morning.  He is lifting his head up well and also did a torso stretch towards his mommy when he transferred between parents the other day.  All of that (plus his progress in eating) is important context for the following paragraphs.

Today, we took O in for his ENT appointment, which was his first evaluation by an ENT since he left the hospital.  When we made the follow-up appointment, we thought that the main focus of the visit would be his laryngomalacia but that turned out to be a minor focus with his hearing issues moving to the forefront.

The appointment proceeded smoothly although O hated the ear exam (once again, quite normal).  We had to lay him on the exam table for this part and it required three people to restrain his flailing little head, arms, and legs.  A heartwarming moment occurred midway through examination of the second ear when he went from screaming bloody murder/purple face to relatively calm/wimpering, and all it seemed to take was a parent capturing his eye-contact at a really close distance. 

As previously mentioned, O's audiogram suggested that fluid in the middle ear might be the cause of his hearing loss.  After this appointment, we have another potential explanation.  You see, Oliver's findings on the audiogram were not "diagnostic" for middle ear fluid.  Rather, the findings were suggestive of conductive hearing loss, and while middle ear fluid is a common cause of this type of hearing loss in infants/toddlers, it's not the only cause.  Anything that stops the transmission of sound waves through the ear will cause a conductive hearing loss.  (Ear wax anyone?)

In O's case, we learned today that his ear canals are quite narrow.  You can't tell this from external inspection of his ears.  He does have skin tags in front of both of his ears which hinted at the possibility of other ear issues, so we're not entirely surprised.

So what's next?

Later this month, O will be evaluated by an audiologist at Riley.  He will have yet another hearing test.  This time, he'll have a bone conduction ABR.  If this is "normal" (ie if sound transmits through the bone, bypassing the external ear mechanism, to the inner ear resulting in a "normal" hearing response), then he will likely benefit from bone conduction hearing aids. 

The immediate goal is to help O hear as normally as possible by 3-6 months of age so that any impact on his language development would be minimized.  A longer term goal might be to actually fix the cause of the hearing loss.  To fix the problem would require surgery, though, and that won't happen any time soon.

Stay tuned.

Thanksgiving

The totals are in for Thanksgiving day.  O ate 80% of his feeding goal by mouth and had the rest supplemented by NG tube.  The report from the speech therapist on Tuesday was excellent.  No signs of aspiration.

We're hopeful to liberate him from the NG tube completely in the coming weeks. 

There's much to be grateful for this Thanksgiving. 

Hope

O had his comprehensive hearing evaluation today by an audiologist.  His tests showed moderate hearing loss in one ear and mild hearing loss in the other ear.  The tests suggested that fluid in the middle ear may be to blame.  If true, this could be remediable.

He will have a follow up evaluation next month before he sees the ENT physician again.

Even before the evaluation, we had hope of a different texture that O would be ok (and so would we) even if he were completely deaf.  We won't turn down the hope offered today, though, even if right now he still doesn't seem to hear anything (no matter how loud E sings or yells).

To celebrate, here's a picture from Halloween.

E Discussing O's Hearing Impairment

Oliver had his first visit to his pediatrician yesterday.  His weight is up to 9 lbs, 1 ounce.  For those keeping score at home, this is up approximately 1/2 lb since his birth almost three weeks ago.  He is starting to take a little more by mouth.  He's averaging 10-20 ml (1/3-2/3 of an ounce) with each feed which is better than the 1-2 ml that we found ourselves celebrating in the hospital.  

It's been a little difficult to know what Ezra thinks about his little brother's situation.  He gave mom a clue on the way to school the other day. 

Ezra:  "Oliver can't hear."

Mommy: "That's probably right."

Ezra: "I'm going to teach Oliver how to hear."

Mommy: "We may not be able to teach Oliver how to hear."

Ezra: "Get him batteries."

Mommy: "Batteries won't fix Oliver's hearing if he can't hear."

Ezra:  "Oliver has four senses."

So, in his non-chalant manner,  Ezra has demonstrated an understanding  that is consistent with the best of our knowledge at this point.  It's a relief in many ways that E has responded in this way.  We haven't had to do a lot of explaining or dealing with an older sibling's anxiety over the situation.  While I'm assuming that Ezra has not carefully considered the ramifications of having a deaf sibling, it's clear that this doesn't change how he views his brother for better or for worse.  Since E can count to ten in approximately five languages, ASL will probably be the next one.

Replacing the NG Tube/ Ezra Teaching Oliver to Read

Since I finished my residency several years ago, I haven't been awoken from a dead sleep to put a tube into someone.  That streak ended this morning, but fortunately I didn't have to run anywhere and nobody's life was immediately at stake.

It only took three days after discharge for Oliver to work the tube out of his nose with his random baby arm movements.  And then only three attempts to replace it in the correct place.   His little swaddle blanket served as a straight-jacket and Rachel held his squirming head in place.

Attempt 1 was properly placed but failed due to inadequate tape adhesion to the little guy's face.

Attempt 2 resulted in the tube not being taped at the correct length (Oliver: "Daddy, please put your glasses on next time.") Don't tell our pediatrician that it was only halfway through the feeding that this error was noticed (no harm done).  At least this finally prompted us to find the stethoscope that was sent to us to help confirm placement.  (See here if you are really interested in learning about confirmation of correct placement of an NG.)  And no, my stethoscope is not at home and I'd probably need to autoclave it before using it on my son.

Attempt 3 while I took Ezra to school, Rachel gently advanced the tube a little bit and re-taped it, all while he was asleep.

We'll see how long this one stays in place.

Everything is going well otherwise and Oliver seems to be "chunking up" as Mommy puts it.  Fortunately, his monitor has only alarmed a few times, mostly due to excessive squirminess.

Liberated from tubes...temporarily.

On a separate note, in preparation for Oliver's arrival, Rachel creatively tried to prepare Ezra for the significance of the event.  Out of all of her efforts, at least one stuck really well with big brother: The idea that someday (I think very soon, in E's mind) he'll get a chance to teach Oliver to read.  So even right now, when Ezra's attention is called to his little brother, he announces, "I'm going to teach Oliver to read!"

You may know about Ezra's reading ability.  He has demonstrated a very innate understanding of phonics that dates back to before he was two, which is a source of continual fascination for us.  We've been asked before, "How did you teach him how to read?"  and "Did you use (X product advertised on the radio) to teach him that?"  Usually, the question comes from a well-meaning parent of a "neurotypical" toddler.  The assumption behind the question is natural.  Don't we all need help to learn how to read?  Apparently, not Ezra!

My internal response to the question is a question: "How did you teach your kid how to point at the balloon and look at you?" or "How did you teach your child to say hello to you most of the time when you walk in the room?"  The former skill of alerting another person to a stimulus/sight through non-verbal skills is called joint attention.  The relative lack of this usually innate behavior is thought to be a key deficit in children with autism.   

Right now, I'm typing away at a free wi-fi spot while I wait for Ezra to finish school for the day.  We are fortunate to send him to a school where he receives one-on-one ABA therapy throughout the week.   The Holy Grail for autism would be to identify specific preventable factors (see this for one example, although the results need to be confirmed).  However, once autism spectrum disorder is suspected, interventions can serve as "secondary prevention," hopefully preventing the "complications" of the disorder.  Although there is no sure way to prove it, we believe this therapy has been quite beneficial to Ezra and there is an evidence-base to suggest that early intervention in toddlers with autism can make a very significant difference (in terms of learning to function socially).  Indiana is one of a minority of states that mandates insurance coverage for autism therapies, for which we are eternally grateful.  The therapies may be the difference between Ezra wanting to read by himself versus sitting down with his little brother one day to help him read. 

(Rest of post is mildly political...)

This is why my heart broke today when I read this story about workers at Indiana's Bureau of Developmental Disabilities Services telling parents to drop their children with significant developmental issues off at homeless shelters.  The children/young described in the story are, for the most part, past the point of "secondary prevention,"  (although not entirely) and most will presumably need intensive services for the rest of their lives.  There may be more to the story, but the basics of it are not too surprising.  There is a long waiting list for Medicaid-waiver services to cover the day-to-day support that older children and adults with developmental disabilities may need and funding for the services has recently been reduced.  I don't stand in judgment of the front-line caseworkers in these situations.  I'm certain that many of them are heartbroken, too.

I'm not certain if there are data out there to support this, but with knowledge of the benefits of early intervention, I firmly believe that stories like this can stimulate an opportunity for the state to support early intervention programs in a more robust manner.  I'm guessing it would be an economic plus for all in the long-run: added cost on the front end, but fewer kids requiring long-term services, fewer families in economic ruin, and (if the stereotype of autistic adults being very honest is true), more taxpayers in the economy!  I really don't think it's a leap to suggest that money would be saved in the long run, and money talks, even though it's the child's outcome that is the most important.  The main barrier to the development of early intervention programs is that they require a high volume of specially trained individuals which I'm certain the state currently lacks. 

I'll step off the soapbox- thanks for listening and understanding my passion, even if you don't agree with the politics.