Thursday, April 28, 2011

More about me! And my boy!

So yesterday I blogged a little about my first day of motherhood, and how I was thrown an enormous curveball from mother nature.

Unless you've watched your child suffer, I doubt there is any way to explain to someone else the depth of pain that causes in a mother (or father).  Ian's entire existence was suffering as an infant.  The feeding tube in his belly looked like a hose--it was about a foot to 18 inches long, and we would roll it into a coil and pin it to his undershirt.  He couldn't lie on his belly as babies do because it caused him so much discomfort.  That resulted in a domino effect of physical delays for him.

Ian had the tube in place until he was almost 8 months old.  He couldn't lie on his belly, so he couldn't begin to creep or crawl.  He also could not hold up his own head until he was 4 months old.  He had a condition known as hypotonia (floppy muscles), which made everything so difficult for him.  We had him in physical therapy to help strengthen him and to assist him with his coordination.  Ian didn't begin to sit up until he was about 10 months old, and didn't walk until he was 18 months old.

Oftentimes, Ian's tube would come out, so I had to learn how to reinsert it.  Imagine having to place a tube into a hole that would go into a baby's stomach; that's what I had to do.  I was so afraid I'd hurt him.

His esophagus had a stricture (tightened area with no peristalsis ability) in it where the surgery was performed.  This resulted in Ian having choking issues every time he tried to eat solid food.  When he was 2 months old, he had to have the esophagus dilated.  The doctors had placed a long piece of surgerical thread through his nose, down his throat, and out the hole where the G tube was.  They had to tie the string in a knot and every time he swallowed, the string would be swallowed.  I can't tell you how many well meaning old ladies would try to pull the string off his face.  Arrrghh. 

When he had the dilitation done, the nurse told me to wait in the waiting room.  I asked why because I wanted to stay with him.  She insisted that I could not.  It took a very long time, and when the doctor and nurses came out to talk to me, they had tears in their eyes.  They were covered in blood.  When they handed my baby back to me, he was like an animal.  I never saw eyes like that on a person.  They were like the eyes of a scared rabbit.  He was inconsolable.  The nurse just said to me that the procedure was barbaric and she wished there was something they could have done to help comfort him.

To this day, I have no idea what happened in that room.  That night, he was still in this terrible state, so I called his pediatrician.  He told me to bring him to the ER, where he decided to perform a lumbar puncture.  This was 'in case' Ian had meningitis.  The trauma of that procedure after what he had gone through earlier made my poor little boy almost go into shock.  It took him days to begin to act normal again.  He didn't have meningitis.

When Ian was 8 months old, he came down with a deadly case of bacterial pneumonia.  He had to be hospitalized for four weeks over the Fourth of July holiday.  After that, he was sick with bronchitis and/or pneumonia over and over again.  He would be hospitalized when he was in 3rd grade, again, with pneumonia.  Most of the time, I recognized the symptoms and caught it in time to start him on antibiotics before he had to be hospitalized.

As a baby and toddler, Ian had very little coordination.  He would fall constantly and never put his hands out to catch himself.  He hit his head incredibly hard off cement numerous times.  The doctors said he didn't have the instinct to catch himself because he had so many developmental delays.  When he was 13, he was playing tag in the yard, tripped, and fell hard.  He began to vomit, so I took him to the ER, where he was diagnosed with a concussion.

When he was in 8th grade, he was playing Red Rover, and was knocked down, he broke the humurous bone in his arm.  Then, a few years ago, he was running a 5K with my husband.  When the starting whistle went off, I saw them both take off, but lost sight of Ian because of the throng of people.  I didn't realize until the came into the finish line that he was injured. 

At the start, he tripped over someone's foot, fell, cut up his face, nose, hands, knees, and elbows.  The next day he awoke seeing double.  The doctor confirmed another concussion.

When Ian was learning to talk, he was unintelligible.  I knew it was bad when even I could seldom make out what he was saying.  I had him tested by a speech therapist at age 18 months.  She encouraged me to help him with certain skills and return in a year.  A year later, there was improvement in that he had begun to string words together, but his ennunciation remained very poor.

We put him into speech therapy.  We had his hearing tested on a few occasions.  He always passed the hearing screenings.  When he was in kindergarten, his teacher complained on an almost daily basis about his lack of listening skills.  She was driving me crazy with all her complaints because at home he seemed to listen fine.

The following year, his teacher called me and asked if I would give her permission to have an audiologist do an in depth examination of Ian.  She didn't think he could hear much.  I agreed.  It turned out that Ian had very poor hearing.  No hearing at all in the right ear, and limited in the left.

We spent the next couple of years taking him back and forth to Pittsburgh to a hearing specialist, who in the end could never find a cause for his hearing loss.

Ian wore a hearing aide, but when he was old enough to make decisions for himself, he abandoned it.  To this day, he refuses to wear it.  Remarkably, he has succeeded quite well at relationships, school, work, and other areas.  I do wish he'd wear the aide, but he's very stubborn. 

When he was born, I thought somehow his defect was my fault.  I took such good care of myself.  I didn't smoke, had never used drugs, didn't even use medications for anything legitimate, didn't drink alcohol, and not even coffee.  What did I do to cause this?!

Thankfully, a very wise nurse who taught my childbirth class talked to me.  She informed me that TEF/TEA is a random syndrome that is often found in firstborn males.  There is no reason it happens.  There is no one to blame.  It happens when the esophagus and windpipe are developing.  Interestingly, at the time of pregnancy when those tubes are developing, I began to bleed and ended up in the ER.  My doctor said my body might be miscarrying and that the chances of the pregnancy continuuing was 50/50.  I wonder if my body was aware that something was amiss?  No matter, I am thankful I did not miscarry!!!

Ian is so intelligent!  He is talented in writing, the art of persuasion, and games of strategy.  He has an almost perfect memory.  He has taught me so much about life!  I've never seen anyone with as many friends as Ian.  He is very popular and likeable. 

He has a witty sense of humor, and is a great big brother to his five younger siblings.  He is generous with them--buying them gifts and sharing his video games and systems freely with them. 

I'm so happy and proud of my son!


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