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Archive for the ‘uveitis’ Category

“Rich man can ride and the hobo he can drown
But I thank the Lord for the people I have found;
I thank the Lord for the people I have found

While Mona Lisas and Mad Hatters
Sons of bankers, sons of lawyers
Turn around and say good morning to the night
For unless they see the sky…
But they can’t and that is why
They know not if it’s dark outside or light.”

~ Mona Lisas and Mad Hatters, Elton John

I have not felt like writing.
I’ve been playing online poker and sending out (mostly Christmas) cards,
playing with stickers & markers like a kid
listening to (new to me) old music from the early 70s
(Genesis and Elton John, their really old stuff…)
I’ve been staying up way later than I used to
and trying to unravel the sticky red tape of Medicaid
and trusting it shall be unraveled, soon & successfully.
I’ve been dreaming of the Pacific sun over the Big Island
and not thinking about Jonah’s (4th) eye operation on Monday.

Perhaps some pictures. I’m just so very tired.

O

He looks like a pissed off mini-Beatle in this photo.  And, more and more I think, in pictures you can tell his left eye looks so different from his right eye.  Evidently he has just had a haircut, and S, one of his direct care workers, says he is muy bonito.  (She speaks Spanish and if I had kept up with my Rosetta Stone, so would I).  I can’t wait to see him on Saturday.  I couldn’t go last week because I had the kind of migraine where you puke 8 or 10 times and lay there in the bed in between, twisting and pushing your face into the pillow to seek comfort, cushion, relief.  Anything, anything.  I was so desperate.  I’d never hold up under torture.

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Jonah is high-fiving E, one of the kick-ass caregivers; she keeps track of all his records and she advocates, smiles, hugs, and is generally awesome.  Plus she and J drive him to and from many doctor appointments.    Here they are at Jonah’s recent glaucoma doc.

I took this (nothing really happens) video sitting next to Jonah in the backseat of car ride.  You can see how all around his lips are chapped (we took care of that in a few days with some Burt’s Bees) and he is rhythmically rocking to some Top-40 song Andy has on the radio she said disdainfully.  I like when he gets all smiley and turns toward the window.  By the end he reminds me of Carl from Slingblade.

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Manzo likes to be inside boxes and bags.  The bag is appropriately from the World Wildlife Foundation. <– Just as I typed that M opened the door to let Jack out and Manzo scooted out as well, jumping the fence into our next door neighbor’s yard immediately.  I am trying not to panic because I know we can’t catch him if he doesn’t want to be caught, and it’s cold out so he should come back in.

Damn it though.

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Dear Boo,

Mama is so sorry, sweet angel, but it looks like you are going to need another eye surgery, and soon.  See, the one they would normally do requires the patient to avoid touching the eye for two weeks, and we know you can’t do that, and we can’t explain it to you, so we have to try something else, and these laser eye surgeries are the something else.

This might not even be the last surgery.  The surgeries aren’t helping so far, and what we’re trying to do is make sure you can continue to see.

People with autism are usually visual learners, and you seem to be one as well.  Thinking in Pictures by Temple Grandin explains this somewhat, and if you could read it I would give it to you and see if you agree.  I don’t really even know if you can read.  They talk about the sight words you know, but even illiterate people know what the STOP sign says.  I don’t know if it matters that you can read, even.  Sometimes I wish you understood more and sometimes I am grateful for your ignorance and innocence.

Have the eye appointments and surgeries become part of your normal?  I guess they must be, by now.  You tip your head back for the eye drops like an expert and read the eye chart like a brave little man.  You are as patient and tolerant of the neurotypical people around you as you can be.  I have no idea how difficult it is, to be surrounded by people who do not understand you.

I’m so sorry, sweetheart.  Mama and daddy are doing their best to make sure you are not in pain, that you have eyes that are healthy, a strong little body, and a calm, peaceful, happy mind.  I’m sorry you don’t have many of those things and I’m sorry there isn’t anything I can do but trust and pray and hope.  I can research, and listen to my instincts.  Hold you close for as long as you’ll let me.  Breathe you in.

You amaze me, Jonah Russell.  Daddy and I will do the best we can for you, for as long as we live.

Mama promises.

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kiss eye

Thank you all for lifting me up with love and light and prayer.  I know I am biased but my boo really is so brave and amazing.  Jonah was great on Monday for his eye operation, even though we all had to be there at 6am, and I was very proud of him (after I stopped being nervous – when it was all over).

the way he sits and holds his body and arms/hands is very much like his mama

I gowned up to walk him in the OR and be with him while they gave him his mask for the anaesthesia.  The nurse was kind and treated me with kid gloves.  “You may see his eyes roll up in his head,” she gently warned.  I remembered that horrible first operation, how I sobbed and begged the people in the room to take care of my boy.

“This is his third eye operation,” I answered, “so I’m kind of used to it now – but thank you.”  How kind they were.  As soon as his eyes closed and he relaxed back onto the operating table, I kissed Boo and left the room.

While I was sitting with my mom in the waiting room, the reception desk phone rang and they called my name.  My mother and I looked at each other, trading fearful glances.  It hasn’t been long enough.  And then to make it worse, they tell me it’s Dr. S (the surgeon) on the phone.  But only to tell me the surgery is over, that Jonah did fine, that he is in recovery.

Soon afterward we were at his side as he groggily asked for ice cream.  They did let him have red popsicles, and he ate three.  His left eye was weirdly wide-opened and dilated, but not oozy or yucky and he kept blinking it shut hard.  It was as if it wasn’t quite painful or itchy (and of course I don’t know) but rather sensory-deprived.  He wanted pressure on the eye.  “Kiss eye,” he begged me over and over.  I told him to close his eye and I kissed the eyelid.  He smiled and giggled; grabbed my hand to pull me closer. “Kiss eye,” he said again.  I must have kissed his eye a dozen times.

My brave, wonderful boy.  They drove him up again today for a follow-up visit with the doc/surgeon, and this time my dad came with us.  Jonah was amazing again.  He read the eye chart and held the little black instrument to each eye (and yes, he tried to cheat again), he put his little chin into that scary eye machine, he tipped his head back for the eye drops, and he was calm through examinations with scary looking instruments.  To be honest, he is better at the eye doctor than I am.  I hate having drops put in my eye, and when they don’t explain to me what’s happening and what exactly they are going to do to me, I get physically sick.

Before both visits Jonah paced small circles and asked in the van? (meaning can we please get the hell out of here now?)  Today I used new Strawberry Fields tic-tacs and pomegranate seltzer (which he dubbed, of course, white soda) to treat him.

He immediately identified the tic tacs as candy and started asking for them as such.  I’d give him one or two between procedures, instructing him to chew.  He was so good and so happy.  I know this sounds weird but it really made my day.

The day started off shitty, too.  It is the 10th anniversary of my best friend Gina’s suicide.  Now she has been gone longer than I knew her.  This morning was awful, with me walking around weeping and poisoned by putting on grief, dressing myself in it as a burden in martyrdom…but M, Andy, & my friends/readers loved that nonsense out of me.  Thank you.  And Gina, watching over my boo, guardian angel style.  Thank you, Brother Peen.  I love you.

It turned out to be kind of an amazing day.

Jonah and “Pa” (my father)

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I love when Jonah’s school sends me photos:

Jonah, my little Boo, connecting his train cars carefully at school

Oh, Jonah.  Mama and daddy are trying hard to advocate for you while dueling eye docs offer equally insistent yet diametrically-opposed opinions on your Retisert implant & whether or not to take it out.

Eye doc number one strongly recommends NOT taking it out at this time and thinks doing so could be dangerous.

Eye doc number two seems anxious to remove it, and the sooner the better.

Every pediatric ophthalmologist I can find within this area is in the same practice as either doc one or doc two, so no real possibility for another opinion there, and these constant medical problems for my little boy are pissing me off today.

Stop piling all this shit on my child, damnit…. most of Jonah’s doctor visits are two-to-three hours long, odysseys of which Jonah endures with admirable spirit and patience.  The poor kid.  I do research online and pore over articles I can only half-understand even after two or three re-reads.  Today I called the nurse at Jonah’s school and am going to call his primary care doc first thing Monday morning.  We all need to advocate together.  Andy has long shifts of work now so it takes both of us to figure all this out.

There is more.  Doctor number one sees “activity” in Jonah’s right eye indicative of the same uveitis as the left eye.  Now Jonah has drops given to him in both eyes.  I’ve read articles about uveitis, claiming that it is responsible for 17% of vision loss, and I’ve read articles about how glaucoma is treatable until surgery is necessary.  After that I hate the word they say.  Blind.  I’m going to indulge in my histrionic state of mind and say if Jonah loses his vision I will go fucking stark raving angry, mad with the universe, mad crazy.  Mad.

I would never blame Divinity.  I don’t believe God works that way.  I don’t believe “God does not give you more than you can handle” and I do not believe “God only gives special children to special people.”  They are nice things to say but I do not believe them.

“I do not think God makes bad things happen just so that people can grow spiritually.  Bad parents do that, my mother said. Bad parents make things hard and painful for their children and then say it was to help them grow.  Growing and living are hard enough already; children do not need things to be harder.  I think this is true even for normal children.  I have watched little children learning to walk; they all struggle and fall down many times.  Their faces show that it is not easy.  It would be stupid to tie bricks on them to make it harder.  If that is true for learning to walk, then I think it is true for other growing and learning as well.

God is supposed to be the good parent, the Father.  So I think God would not make things harder than they are. I do not think I am autistic because God thought my parents needed a challenge or I needed a challenge.  I think it is like if I were a baby and a rock fell on me and broke my leg.  Whatever caused it was an accident.  God did not prevent the accident, but He did not cause it, either…. I think my autism is an accident, but what I do with it is me.”

 ~ Lou Arrendale, the main character.  He has high-functioning autism.

From Elizabeth Moon’s The Speed of Dark

I agree with Lou’s assessment of what God causes and what God doesn’t.

Years ago, before he had uveitis or glaucoma,                    posing with his big brown eyes

What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him….all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions.   He’s going to help us get to the bottom of all this.  He’s my ace in the hole.

For now I’m going to just enjoy seeing Jonah tomorrow.  He’s been a good boy, they tell us.  Good in school, good at his house.  Good = no aggressions.  Good is what I will focus on.  What you focus on expands, they say.

Focus.  I really meant no pun.  But for now I’m done.

(I didn’t mean to rhyme, either).

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