His Sweet Ears

Days like today are exhausting for both Thomas and I for many reasons.  Today we had our quarterly hearing test with our audiologists and his bi annual check up with the ENT.  Thomas did not perform well during the testing.  He is adamantly against anything going in, on or around his ears.  Luckily, we do go up to Scottish Rite where there are always two audiologists on hand to assist each other which made all the difference in December when we went.  However, it did not make much of a difference today.  Thomas was having nothing to do with them at all.  We tried several methods of distracting including pegs, bubbles, lights, stuffed animals, flashing lights. . . . you name it he wasn't falling for it.  So, we were able to determine his tubes are open, in place and working properly.  He did respond to three of the four frequencies in the sound booth which is considered inconclusive at this time since it was hard to determine if he didn't hear the fourth or was just unwilling to play today.  They also attempted an ABR on his ears, but he wouldn't stop screaming long enough to get an accurate reading.  The ABR helps detect six major frequencies but again at this appointment was considered inconclusive.  Thomas has been consistent in being able to hear the most important frequencies that are used with speech and voice, but come in at borderline outside that range.  We go back on May 1st to try again in an effort to get a good reading due to his history of hearing loss and high risk category.

We met with the nurse practitioner first who examined his ears, nose and throat.  The tubes looked good but one ear did have some wax she didn't particularly like.  So, we went down the hall to the other room.  No one likes the other room. It has a very large microscope and we had to pin him down and hold him in place while she used special tools to dig and clean it out. :(  My baby was really done at this point.

Finally we saw our doctor, who is pleasant and friendly as always.  We discussed that Thomas' hearing issues could stem from three possibilities based on his syndrome and related issues.  It could be nerve development, bone development or due to the hypotonia (low muscle tone).  At this point we are going to assume it is based on the latter as the other would require additional testing and such that may or may not be necessary.   The doctor also explained that the general tube placed in an ear only last for about 14 months and then fall out on their own.  In Thomas' case, he will need a third set of tubes to continue the hearing correction.  Therefore, the tubes he has in now will probably begin to fail by the summer and a third surgery will need to be scheduled to place in new tubes.  He did agree that based on this information he would like to place in a different type of tube that would last longer than 14 months.  That would be nice.  So, unless his tubes fall out before then we will see him again in September.

I wish I had better information or news to share with you all.  Today was another day of reality that the issues that we have just aren't going to go away.  But we have him with a great group who are paying attention and are doing all they can to correct this issue in a timely manner to prevent any lapses in hearing for him.  I have no idea what this means long term right now and frankly I didn't ask.  I am dealing with today and this year and we will just go from there.  As long as my baby can hear and continue to develop the best he can on time.  I am good with that.