Saturday, January 26, 2013

The Journey Begins

I have two kids, two books I'm in the process of writing, and two blogs already.  And yet, I feel compelled to start another blog, sharing the journey I've been on with my son and hubster and God.  I kept it from my other blogs because I felt it was too personal.  But I really feel I need to share it.  Share what we've been going through and why it's impacted my writing and my faith and who I am.  And I hope that if there's anyone struggling with similar things with their kiddos, that they stumble across this blog and find it helpful.  So, here goes blog three. :)

You see, my son (currently 2 1/2) has had a lot of obstacles in his short life.  Obstacles that have been time consuming, worrisome, and yet have molded me into a stronger mom, stronger woman, and stronger in my faith.

Obstacle One:
When my son was born, a standard hearing test revealed a hearing loss in one ear.  We were told to bring him back in a month to see if perhaps it was temporary, just fluid in his ears, etc.  It wasn't.  Another referral to another doctor only confirmed he had a hearing loss.  They couldn't do anything until they determined how severe the loss was.  So we were referred to another specialist.  More confirmation he had a hearing loss in one ear but no further indication of its severity.

Finally they recommended a sedated hearing test (ABR).  Before he was to be sedated (completely asleep) he needed a trip to the pediatrician two days before the sedation to clean his ears of wax and determine he was fit for sedation.  We scheduled his sedated test, I took him to his pediatrician and we were told due to fluid in his ear we had to reschedule the test.  A month later, we repeated the process.  No fluid, all was a go for the sedation.  But the morning of the sedation he had a cold and a fever and was therefore unable to be sedated.  Another month later, the same exact thing-another cold.

After three times, we felt like maybe this wasn't meant to be.  Back to the hearing specialist we went.  They did the test again, said there was nothing they could do, we had to do the sedated hearing test to get more information.

Fourth time was the charm.  He was an absolute champ with the IV, sedation, everything.  And finally, we were given the news.  He definitely had a hearing loss.  And it was severe.

That basically meant for the first year of his life he wasn't hearing much in that ear.  Luckily his other ear is working perfectly, but it was so frustrating to think he could have had a hearing aid so much sooner if we hadn't of had such a run-around with all these hearing tests, trips to audiologists and ENTs.  It wasn't until he was 15 months that the hearing aid was fitted and in.

I wasn't upset when I found out he was hearing impaired.  In fact, I don't even view him as such.  He's my lil monkey, my joy, one of the best things in my very blessed life. 

Watching his favorite cartoon (with the remote, what a guy!) with his hearing aid in at age 2.

Obstacle Two: 
When my son was little he would cry when we put him on his tummy.  Not just whine, but scream.  He hated being on his stomach.  He learned to roll from tummy to back quickly, but never rolled back to tummy.  He learned to sit on his own rather quickly, by 4 months.

By 9 months, he still wasn't rolling over back to tummy, nor was he making any attempts to move out of his sitting position.  His sit wasn't straight either, but like he was slightly hunched over as you can see in this photo.  I had asked several pediatricians about his physical development and my concerns multiple times, but they continually told me babies develop at different rates and that he'd catch up.  So at 9 months I put my foot down.  Told the pediatrician something was wrong.  Demanded they do something.  And they referred him to physical therapy.

Our physical therapist (PT) was amazing!  Apparently, my son had a locked pelvis.  That meant that since babies these days spend so much time on their backs and sitting up, his pelvis was locked in those two positions.  His pelvis was probably already tight when he was born and worsened because he refused to be on his stomach.  When we laid him on his stomach his cries weren't because he hated tummy time.  It was because he was in pain.

The PT told us if we hadn't come in before he was about a year, the locked pelvis could have become a permanent thing. He could have been in a wheelchair for life. 

Weekly I took him in for physical therapy.  Our amazing PT did exercises and stretches on him that did not make him happy (in fact, he screamed for the majority of his first month or two of therapy) but immediately we could see results.  Instead of him always sitting in a curved posture, he could sit up straight. 

Also, weekly, we went to the chiropractor, where she did manipulations on his back, hips, pelvis, and legs.

Within a month of PT and chiropractic care he was finally rolling over!  And just before his first birthday, he was finally on the move!  My boy was a crawler and life was good. :)

At this point we no longer needed chiropractic care, and went down to physical therapy every other week.  It was such a relief to have less appointments, both emotionally and financially. 

He became such an expert crawler he didn't want to walk.  Man, he was fast!  Other moms would comment on how fast he was crawling, but then they always asked the question I dreaded: "How old is he?", and I always got the same look of surprise when I told them.  

At 17 months he took his first tentative steps and I cried when both hubster and I witnessed it.  But immediately he returned to crawling, not attempting to walk again until he was almost 19 months.  Finally, at the beginning of his 19th month, he was walking exclusively!

Sometimes I just grin watching him run around now, remembering how far he's come.

Obstacle 3, and the main reason for this blog:
He is unable to talk.  We noticed when he was about a year old that he wasn't babbling much or saying any words, but I was much more preoccupied with his gross motor delays then his speech.  Plus, our physical therapist said that generally speech comes around the time they start walking, and since he wasn't anywhere near walking I wasn't that concerned.  The ENT told me because of his hearing loss he might have a slight speech delay.  But at sixteen months and still complete silence-not even babbling-I was extremely concerned.  At seventeen months I met with our state's Early Intervention services and he qualified for twice monthly speech therapy visits.  (If your child or a child you knows has any kind of delay, call your state's Early Intervention services.  It's a free evaluation, in which they can help you give your child the services they need (speech, physical or occupational therapy, etc).   And you don't need a referral, so if you're concerned, just call.)  But frustratingly, no progress with speech therapy was made until we moved to another state.  Our new speech therapist is AMAZING with him and is helping him learn to say his vowel sounds.  We see progress.  It is slow going and frustrating, but we see progress.

He has not been officially diagnosed with Childhood Apraxia of Speech, but our speech therapist and my husband and myself believe he has it, and so we are treating him as if he has it.  We will have to wait until he is vocalizing more before he'll get the official diagnosis.  In the meantime, we wait, we work on those vowel sounds, I continue researching this disorder, and most importantly, we pray.  And I am beginning this new blog.

Thanks for joining us on this journey!


  1. Thanks for sharing Jenn. It gives us insight into our lil nephew's growth and new developments. We will certainly pray! We are so proud of you both as parents for seeking the best for him no matter what. We are also proud of our lil nephew for his incredible progress and sweet joy along the journey. I love the name of the blog too. Such a precious and fitting verse. Love you all!

  2. What an adorable little guy! Glad you were the winner of my giveaway. It sounds like you are much the Thinking Mom like I am. Are you doing hand cues with your son? Jake always had fluid in his ears from about 1 to 2.5 years old and one time we had to go to an ENT to have impacted ear wax removed. It sounds like he would be a good candidate for Lynn Carahaly's Speech-EZ hand cues b/c her theory is kids have to learn sounds in a different way (i.e.- hand motor movements) when they didn't pick up sounds when they were supposed to b/c of ear problems. The sound has to take a different pathway in the brain in order to get out. I'm sure I didn't explain it as good or scientifically as she did in her webinar last October, but it has really worked for us. I wish we would have started "officially" before age 4!

  3. He is so adorable Jenn! The baby pictures melt my heart. You are a great mom and he is so lucky to have you. I am reading through the blog as I have time and I am sending you my strength. Having a kiddo with delays is so hard. But I know in my heart that your son and my son are going to do great things! HUGS!!