Bittersweet

"Courage is not the absence of fear, but rather the judgement that something else is more important than fear."

-Ambrose Redmoon

This week has been bittersweet.

Again, I find myself unable to sleep...starring at the baby monitor...watching the movement of his chest.  Luckily sweet Tinsley has calmed down for the night. She's awake, cooing, smiling and reaching for her toys.

If I said I wasn't scared, I would be lying-- we are certainly being tested to the max.

Two weeks ago the neuropsychologist diagnosed Hayden with Expressive Communication Disorder and mild Sensory Integration Dysfunction.  Both manageable.....both treatable...

This news came as no surprise.

But on Tuesday we were taken back by some unexpected news and again challenged today with many unanswered questions.

Hayden's sleep study results came back.  Obstructive Sleep Apnea. In the past all of Hayden's specialist felt that there was no need to see an Ear,Nose & Throat Dr. (ENT) for his sleep issues because his tonsils and adenoids appear to be normal size. But due to this recent finding we will be seeing yet another doctor next week to explore options.  The developmental pediatrician would like surgery to be considered, but the course of treatment will ultimately be up to the ENT.

Today the neurologist let us know the results of his MRI and the DNA Microarray.  She was unable to let us know how the rest of his labs were as the results have not made their way back to her desk (not really sure how this happens, but apparently it does!).   The MRI indicated signs of Dysmyelination.  Because most of the mylenation occurs prior to the 3rd birthday they are unable to conclude whether or not this is a significant concern for his development, but the delay was noted as something they are going to be monitoring.  Dysmyelination is common in several disorders such as developmental delay and Autism.  In Hayden's case it actually runs hand in hand with the DNA results as well.  The DNA Microarray indicates that Hayden has a deletion of Chromosome 18. In fact he fits several of the traits of 18q- syndrome...

Unfortunately we are left without answers until we can get in to see a Geneticist for a proper diagnosis....

For a year now I have been so frustrated with not having answers to Hayden's seizures, sleeping issues, feeding issues and speech delay.  Until this week test after test had come back negative...on paper, he was normal.  I had been angry about the lack of answers....irritated with constantly hearing that he will grow out of the seizures and delays and that I am just a paranoid mom worrying over nothing....

This week I am angry that they didn't just tell us the results were normal...I guess I was expecting the same "everything is normal, we will see you in three months for a follow up." My heart sank...

A part of me wishes that I was over-exaggerating my concerns  and that I was just a crazy "first-time mom" worried about her little boy....

The other part of me feels some relief...some sense of confidence. Maybe I have knowledge of what is right and courage to stand up and fight when I know something is wrong.

Could this be our opportunity to get answers?  Will we finally have an idea of what to expect for our boy and his future?