Friday, November 2, 2012

Our Story: 18 months after a baby stroke

The Scary News

The ENT (Ear-nose-throat doctor) wants to do a Modified Barium Swallow study.  He wants to rule out aspiration (food going down to the lungs).  I thought Baba would be showing signs that he was aspirating (ie. coughing, wet sounding gurgle, aspiration pneumonia, etc.), but the ENT says that he could be aspirating silently.  It's so crazy.  I was worried that he wasn't eating enough, but now I'm worried about feeding him.

Somewhere in the back of my mind, I was worried about his swallowing.  I mentioned it to everyone I met.  I finally met a specialist who gave credence to my fear.  I guess it's a good thing.  Yet it scares me.  What if his lungs are already damaged?  Will they heal?

After the swallowing test, he wants to put him under anesthesia and check his hearing.  He kept saying, "on the operating table".  All I could see was flashbacks of my son in the NICU with wires coming out of every limb.  I started having a panic attack.  As if my head was bobbing in and out of water, I kept struggling to breath, hear, and speak. 

I had so many questions.  Do we have to test the hearing now?  Couldn't we wait till he could tolerate the test without needing to put him under?  What are the risks for this procedure?  Are there alternatives?

I didn't ask any questions.  I stood, dumbly staring into space, trying not to have a complete breakdown. I kept seeing my son "on the operating table" with wires coming off of his head, his nose, and his mouth.  His tiny body surrounded by big people hiding their humanity in white gowns, latex gloves, and masks.  Do we really have to do this?  Will I see my son again?

A part of me realizes the chances of something going really wrong is a tiny percentage.  Yet, I can't help wondering if it will.  A baby has a 1 in 2000 or 0.05% chance of suffering a stroke at birth.  I believe the chances of something going really wrong on the operating table are higher.  I don't like percentages.  I was never a gambler.

Yet I know that knowing what hearing problems my son is having will have a significant impact on his speech and language, his emotional development, and his social skills.  Starting treatment early will definitely impact positively on his life.  It will definitely help him get the help he needs.  Yet a part of me wishes I could delay the testing.  I wish I could prevent another stay in the hospital.

The Good News

On the other hand, Baba is talking more.  He is more willing to say new words and he's started to sing the alphabet to the letter "g".  He will still need help with articulation and consistency, but he has made dramatic improvement in the last 3 months.  I am really pleased with his progress and I believe he is too!  He seems so proud of himself!

His physical development is still his strong point.  He is now able to climb up the stairs holding on to the railing, he can run, he can step over small items, and he is generally more coordinated than before.  He seems more aware of his body and is able to plan movement.

He is able to complete single piece puzzles, stack three large blocks, and flip through a board book one page at a time.  He can paint using a  modified tripod grasp and he is able to pick up small objects using a neat pincer grasp.

Cognitively, Baba is showing increased ability to problem solve, imitate behavior, and try novel activities.  He also displays decreased separation anxiety and is able to play on his own for 20-45 minute blocks.

The Terrible News

Baba has officially started the "terrible twos" early.  He has two crazy tantrums on his belt and he is ready for more!  He is definitely frustrated by the crazy things he wants to moving the bookshelf...filled with books, working on mom's computer, spreading the peanut butter, and so many other things.  He also decided that diapers are a hassle and prefers nudity.   

He quite literally seems like a different kid!  I miss the other more cooperative kid.  Can I say that?  Oh well!!  I just felt emotionally drained after he tried to run away with poop smeared all over his butt, which led to a very loud and emotional protest.  Ugh!

The Better News

He seemed to sense that I was exasperated after the tantrum.  He walked cautiously and finally asked to nurse.  Then he took my hand and put it on his head, asking me to stroke his hair, which he usually hates.  He was "letting me" stroke his hair as an exchange, which amazingly did make me feel better! 

Though the future scares me.  I see that we are growing together and learning how to deal with his new overflowing emotions.  I'm sure that I'll learn to see the signs and I'll be able to deal with this new phase in time. 

On the other hand, his personality is really shining through and he is cuter than ever!  He is really connecting and sharing his world with me.  It's really adorable!