Sunday, July 8, 2012

Risk and Reward

On Friday morning we had our pediatric opthamology appointment--the one which would determine if we would really and truly be able to set cranial surgery aside. 

Sean went with us. We sat in the busy waiting room for close to an hour before they called us back. There was a small corner of the room which had been furnished with kid sized tables and chairs, a box of books and some puzzles. YH zoomed his toy car all around the space, past the other kids. 

At one table sat a little girl about his age with the tiniest feet I have ever seen in my life. She kicked her wee glittery jelly sandals back and forth as she stared at the pages of a book. She wore a back brace on the outside of her clothes, her eyes appeared crossed and she had several silver teeth. Her hair was in two long pigtails and she turned each page with great determination.

Sean was hovering nearby keeping an eye on YH. The little girl smiled up at him and asked for another book. Sean showed her each book in the basket, and she shook her head "no" at the ones that displeased her and "yes" at the ones that met her approval. 

Of course Sean ended up reading one to her. Of course "one" book turned into four turned into five turned into...a lot.

Geez--the sight of my giant husband crouched next to a tiny chair, with a tinier girl in it patiently reading her stories....just. Just, wow.

Eventually YH was called back to the exam room. I had to cradle him while Sean held his head still so that the nurse could put drops in his eyes to make his pupils dilate. The drops sting so first they have to put in numbing drops. YH screamed and cried--it was awful.

When his pupils were finally dilated the ophthalmologist came in to try and see inside his eyes. She shined a light into each eye (when he wasn't squeezing them shut or burying his head into Sean's shoulder to avoid her) and quickly pronounced him nearsighted. Very, very nearsighted--with a slight astigmatism.

I asked about his intracranial pressure--did it appear elevated? 
No, she said--his optic nerve is fine, not swollen at all. 

So, no surgery?
No surgery.

Tiny glasses?
Yes, tiny glasses.

Oh, thank you universe! THANK YOU!

****                       ****    

The tiny glasses are ordered. They should be here in about 10 days.
We have one more specialist appointment on the books, and another to be scheduled.

The latter will definitely result in surgery--but it is not life-threatening, and it isn't time sensitive. At the moment it doesn't effect his daily life so we can wait a little longer to pursue the correction.

The former will likely result in a similarly permanent change to our sweet boy--the assigning of a string of letters to follow his name. 

Our next specialist appointment is with the geneticist--the first stop in what may prove to be a long road to get our son the services he needs to be the best he can be. You see, our son is likely on the spectrum of a "disorder" which is comprised of myriad different physical, emotional and developmental challenges. Each child afflicted by this disorder has a different constellation of symptoms/behaviors/physical defects--and differing levels of severity for each.

This is a disorder which almost always results in congenital brain trauma. It is a disorder which can leave kids looking "normal" on the outside, covering up their damaged brains, so that they are more vulnerable to people taking advantage of them, less likely to be able to control impulses, less likely to keep pace with their peers, more likely to be labeled "troubled"....the risks of "passing" include secondary mental illness, incarceration, addiction.

It is maddening to parent a child with this disorder because it is so hard to find a medical specialist who can tie together all the pieces--and so the onus is on the parents to gather information, stay informed, and advocate advocate advocate.

This is a road many parents of special needs kids have walked. This journey of needing to be one step ahead of the "experts". 

I have mentioned YH's risk factors--his likelihood of having this disorder--loudly and in clear speaking voice to each specialist we have met with so far. And each one has pointed out that he lacks certain distinguishing physical features, features which used to be key in diagnosing the disorder.

And I push. And I say, yes but he does have "x" which is a secondary physical characteristic. And I say yes, but in my reading I saw several articles discussing how this type of "risk factor" can effect his vision--is this the case for my child? And yes, he is on-target *now* but most kids with this disorder start to fall behind around 3 years old UNLESS they receive intervention/diagnosis...

And I can see the experts silently cursing my access to google. I know they think I'm being overly cautious, overly fixated on something which isn't yet an issue. 

Too bad.

This is my job. It is my duty as his mother to fight for this kid--and I am going to make sure that he gets the diagnoses he needs, and the intervention he needs. 

It is easy to dismiss the presence/absence of one symptom; it is harder to map the galaxy of factors that combine to inhibit my child.

I'm willing to risk the eye rolls and the dismissive responses of the doctors.
The improved health of my son--my son who has the deck stacked SO very much against him--is the only reward I need.

1 comment:

  1. Thank God no surgery! My heart went out to you with the hour wait. Keeping him busy that long! I am very very nearsighted with moderate astignmatism and have been since birth (-20 in both eyes if that means anything to you ...glasses not contacts prescription). It's been hard, I have to say. No one know why, so I'm intrigued to follow your story. Best, Best, Best.

    (Four years ago I had interocular phakic implants, likely an option for YH when he becomes "of age" ... he's probably too nearsighted for lasik and don't let anyone talk him into it!!!"