Triplet Princes and a Princess

Triplet Princes and a Princess

Our journey to hearing with Cormac while living our life with triplet boys and a baby girl.

Sunday, March 18, 2012

Going with your gut..

As a Mom sometimes it is what needs to be done.  We know our children the best and while professionals may seem to always have our kids best interest at heart sometimes it might not be enough.  A fellow Mom blogger just wrote about making a big change in her son's life and she went with her gut.  She knew her son needed it and I applaud her for it. 

While Calleigh continues to progress.  I am thrilled with her huge leaps she has made over the last few months.  I have been told Calleigh has low tone.  Her doctors have contributed her late crawling, walking and most of her gross  motor skills delays  on her low tone and also the fact she had two surgeries cutting her belly clear across.  Add to that she had a colostomy bag for eight months and she didn't get the tummy time she needed.

I get all that.  Trust me, I do.  However, I don't feel Calleigh's amount of low tone equal the amount of unsteadiness and unstability she has while walking.  She still doesn't climb stairs yet.  She has a habit of holding her ears all the time.  I think somethimg else is going on. I don't know what but to me it seems like it's related.

I made an appointment with a new ENT who also specializes in balance issues and disorders.  He works in conjunction with an audiologist.  We were able to get in to see him on Friday.  (Friday will go down as one of the worse days for many reasons I will blog about later)

To say it was overwhelming is not quite the right word.  It turned out to be over two hours.  First you are seen by the ENT.  We went over her extensive medical history.  He was instantly interested in her mouth.  He asked me if anything was wrong with her lower lip.  I was shocked because I had never noticed anything and no professional or anyone for that matter has ever mentioned it to me before.    He said it seemed like her left lower lip could not fully move down.  As he put it, like Sylvester Stallone.  He basically wants to keep an eye on it.  I have been watching her like a hawk since and have not noticed anything but who knows.

He checked her ears quickly and said he saw some fluid.  She has only had one ear infection in her life and she didn't have an infection on Friday.  She just had some fluid.  He also said he was "impressed with the size of her tonsils".  He asked if she had any sleep issues or if she has ever had a sleep study.  Nope.  Of all the stuff she has had a sleep study was not on the list.

Next was the audiology appointment.  Calleigh was not so thrilled at the beginning when they had to check the pressure in her ears.  One ear came back as having fluid.  Next we went in the booth.  She LOVED this part.  She was so excited to wear the headphones.  She was a pretty good reliable patient if I do say so myself.  The results??  Mild/moderate hearing loss bilaterally (Melanie Ribich...I could not help but think of you for some reason when I was hearing this news.  You were so supportive when I learned of Ciaran's loss)  Calleigh has had her hearing tested before (several times) and has passed.  The only reason at this point I am not losing  my mind is because I am hopefully optimistic the test was not accurate because of the fluid.

We were seen again by the ENT to go over the results.  We talked for a long time about the results and all my feelings about Calleigh's well being.  He said the hearing loss could be caused by the fluid but it is possible for her to have hearing loss after the fluid is gone.  Apparently, Duane Syndrome can have hearing loss associated with it.  I feel like an idiot for not knowing this. I did so much research when I found out she had this and never came across this fact.  No other doctor ever mentioned this to me either.  That said, Calleigh has had her hearing tested multiple times in her life so I don't feel like a complete failure.

The end result??  She is scheduled to have tubes place on May 5th.  She will also have a sleep study done before the tubes.  Once we see the results of the sleep study he will determine if she needs her tonsils and adnoids removed.  After the tubes we will retest her hearing and pray the fluid was the problem.  We didn't really address the balance issues except to say if she has fluid in her ears it can cause her to have balance issues.  Bottom line he said we don't know what Calleigh's potential is on a scale of 1 to 100 (or for any kids) but we know with fluid in her ears and perhaps sleeping issues due to her tonsils we know she won't reach her potential.  So let's start with the tubes and go from there.

It was a lot of information to take in all at once.  I have been processing it all weekend.  My plan is to just get to the next step and take it from there.  One day at a time.


tammy said...

Oh Jennifer I am sorry to hear this. What a day you must've had. What we feel in our heart, in our gut ... our instincts/6th sense ... mean so much when it comes to our children. Like you said, professionals mean well, but no one knows their child like their mother. Kudos to you for following your gut and taking that leap to get her into a new ENT/audiologist. I will say prayers that the tubes make a world of difference, but no matter the outcome, you are that "take charge, let's get things done" mom! You're amazing!

Aiden's late walking, balance etc. was blamed a lot on his low tone too. Yes, it had some to do with it, but a lot of it is full body motor planning/sensory integration challenges, and OT has been HUGE. PT was wonderful to help with the low tone, but OT has taken it a step further and has been teaching him how to make everything (vision, vestibular, touch, auditory, gross motor) work together instead of against each other.

PS - Were your ears ringing this weekend??? I was talking about your adorable boys and precious Calleigh this weekend to all my family and how cute they all are!

Lucas'Mommy said...

Praying for strength and guidance for you. You're one strong mama!