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Posts Tagged ‘juvenile arthritis’

Whenever I stop blogging for a week or longer, there is too much to say.  Then another day goes by and more happens, and I start to dread attempting to sift through it all to highlight all the events, which then usually get amalgamated.  So be it.

Sometimes I’m lazy and turn everything into a pictorial.  This will be kind of like that, I suppose.

Last week Jonah had a doc appointment with the pediatric rheumatologist at Albany Med.  I love her and her staff.  They get Jonah right into a room and usually see him quickly.  I’d made sure to buy a whole pile of octopi, so I was prepared with both that and a bag of fruit snacks for Boo.  I called my dad to see if he wanted to come, because Jonah is rarely aggressive at this particular doctor, and I thought Jonah would like to see his “pa.”  So my dad met us there.  But Murphy’s Law being what it is, Jonah came at me at his usual light-speed and grabbed the front of my shirt, nearly ripping it in half down the middle.  Luckily both N and P were there from the school, so they intervened quickly and that was that.  It was enough to send my dad off into the waiting room for the rest of the appointment.  Though I tried twice to convince him to come back in the room, he refused.  His theory is Jonah aggressed because he was there, which may or may not be true…but he was a good boy for the rest of the appointment.

Jonah with his octopus and fruit snacks (and still, the eye shield)

Jonah with his octopus and fruit snacks (and still, the eye shield)
Boo, acting all punk-ass, slouched in the big chair

Boo, acting all punk-ass, slouched in the big chair

It’s a shame my dad did not get to see him for a longer period of time. I think he carries a deep sadness inside him, a kind of trepidation in his gut that simply will not abate.  I understand this, though it’s distressing for me to witness.  Sometimes I wish my parents had adopted another kid or two, so they’d have more grandchildren.

This was the second doc appointment that week, the first being the amazing one I’d talked about last post, so I got to see Jonah 4 times in one week, most of which were affectionate and joyful visits.

Though his retina doc still wants Boo to wear the eye shield, we got permission for him to go swimming with a life vest on (so he wouldn’t go too much underwater), and evidently Jonah was okay with that, even though he has never in his life needed a life vest.  I thought he’d pitch a fit, wanting to go deep under and swim along the bottom as is his preference…but I suppose he was in no mood to look this gift horse in the mouth (even one which forced him to compromise).

I missed him so much after that — maybe because I’d gotten to see him so many times the week before.  So I was really looking forward to yesterday.  When my mom and I were driving down I was in an awesome mood.

But the visit was tough.  Jonah was on the playground when we arrived to pick him up, and though I held my arms out wide for a big hug, he ran straight into daddy’s embrace.  This I can handle and understand; he is with his dad more than he is with me, but still I can’t help wishing he’d run to mama once in a while.

We arrived at the apartment and all seemed okay.  I was proud of myself because once he tried to lash out at me and I deflected his swing “Karate Kid” style, wax on-wax off, just like Daniel-son.  But then he got me good a few minutes later, coming at me with two fists and tightening each on a wad of my hair.  I called out and Andy came running, lowering Jonah to the floor and telling me to come with them (as if I had a choice).  I grabbed each of Jonah’s fists and pushed them into my head so as to lower the pain level and ensure he didn’t dig his fingernails too deep into my scalp.   While Andy was trying to disengage Jonah’s fingers and my mom tried to reason with him (Now Jonah, don’t hurt mommy), I writhed on the floor and cried like a wimp.

Then Jonah scratched up my eyelid (my eyes were closed tight) and bit my left arm, twice, hard, leaving painful welts I can feel today.  His shoes were still on, so I got a few nice hard kicks to the stomach as well.  Finally Andy disengaged him and I ran into the bathroom and closed the door.  If I’d had a sense of humor about it at the time, I’d have taken my camera into the bathroom and shot pics of myself.  My hair looked Halloween-crazy, teased into a mountain of snarls and tangles.  I carefully combed it out and removed a huge handful of hair from the comb,  washed my face with cool water, took a few deep breaths, and came back out to the kitchen.

After that he was mostly okay.  I’d bought him a train video (a double DVD of real trains) and he liked that.  We took Jonah for a car ride (my mom stayed back after I helped her log into Facebook so she could look up some relatives) and Andy gave him an eye drop, and for a while it was peaceful enough.  Later we had to pull over twice because Boo started crying and asking for one of his favorite caretakers at his residence.  Each time Andy got out of the car and hugged him tight, letting him cry.  I breathed deep.

We'd taken the eye shield of to give him his drop but you can see how it looked all gooky

We’d taken the eye shield off to give him his drop, but you can see how it looked all gooky

We have two more eye doc appointments next week – one at the glaucoma doc and another back at the retina doc.  I hope and pray the blood in his eye has abated, and that he will have some sight left in the eye, and that he can swim as he likes for as long as he likes.  My poor Boo.

Someone at his school called me last week to see if I had any questions about Jonah’s progress or anything I was concerned with, and I mentioned the medications and the aggressions-sans-antecedents, and she assured me that it was a fine idea to speak with Boo’s med doc, though I still want to wait until his eye situation is under control.  Also, the pediatric rheumatologist saw no problems with his joints, so if he does not need it for the eye, we may be taking him off the Humira and possibly also the Methotrexate.  So I don’t want to monkey with his psych meds at the same time.

It is hot today and I am smiling just picturing him able to go in that pool – not being left behind as all the other kids get to swim.  I hope he is having a happy day.  I’m still doing well and shrugging off the incidents where he hurts me.  I know he does not mean to hurt his mama.  I know he loves me and I love him and we are all doing everything we can to ensure his happiness, safety, and well-being.

I know we are lucky – especially when I broaden my perspective and think of the rest of this planet.

Every morning I wake up and the first thing I think is thank you.  My new job has an overwhelmingly positive effect on every single piece of what I think, what I do, and what has become most important to me.

Andy may bring Jonah up this week to swim in my mom’s neighbor’s pool.   We just have to borrow a life vest from someone.  I will get in the pool with him and we’ll have a blast.  At least this is what I hope.

“We must accept finite disappointment, but never lose infinite hope.”

~ Martin Luther King, Jr.

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Andy drove Jonah up to the glaucoma doc this morning and I met them there.  The good part of that is I got to sleep an extra half hour and I got to see my Boo.  The bad part was the damned operation they’ve scheduled to take the Reticert implant out of Jonah’s eye on the off chance that it’s still emitting steroids, in which case we need that to stop.  Jonah, as usual, was very good through all the exams and procedures, the eye drops and pressure gauge.  But his left eye is 20/400 (20/200 is legally blind).  And so May 14th he’ll have his 5th? 6th? eye operation.

After today’s appointment Andy brought Jonah outside and I stayed behind to talk to the doc and do the paperwork.

“Is there anything we can do to treat that eye…to improve the vision?”  I ask doc S.

“Well, if he were a normal boy…”  he starts.

That’s all I hear.  Yeah.  If he were a ‘normal’ boy he could wear glasses that he wouldn’t throw and smash, and he could have the permanent operation to redirect the drainage in his eye, but he can’t…he’d rub his eyes and crush the whole mechanism before it healed. 

Why can’t this doctor just answer the question?

He gives me a brochure about glaucoma.  It’s the brochure I read months (a year?) ago – the one that says glaucoma is an eye disease that gradually steals your vision and glaucoma usually occurs in both eyes, but extra fluid pressure often starts to build up in one eye first.

I tell him I have read the brochure.  I ask him about that first sentence – the steals your vision part.  He smiles at me, answers “if left untreated,” and is already out of the room before I can respond.

If left untreated. 

Well you just told me we can’t treat it, I want to yell after his retreating figure.

I realize I’m painting an unfairly poor picture of Dr. S. here, but what I want is the bedside manner of that rare, wonderful doctor who will sit, listen, and speak to you as though you are an intelligent human being (instead of aiming medical terms over your head then ushering you out the door).  But people rave about this guy.  He has “Best Doctor” awards all over his office.  (Today I noticed he’d re-arranged them). I’m sure he is a fantastic glaucoma specialist who’s great with the demographic of the majority of his patients:  an aging, docile population of ‘normal’ people.   He is kind to Jonah in an off-hand way but never learns that Boo does not converse and is never going to answer his questions about whether or not Santa came or what kind of Easter he had.  It isn’t like Jonah hadn’t been there 10 times or so before.

Grandma?  Jonah answers when the doc asks him one of these questions – and where can the doctor go from there?  I smirk, turn my head.  Way to shut him down, Boo.

And so after the doc appointment Andy brought Jonah to see grandma.  They all drove to the train in grey car and my mom told me later that Boo was good; they saw a very long train which pleased him very much.

Easter was kind of a blur.  Andy drove Jonah up and I met them at grandma’s.

Easter Boo
                        Easter Boo

My mom made delicious food but now it is always pre-packaged up, one for Andy, one for M and me.   There is no pretense of sitting down to eat and there hasn’t been for some time.  It’s better this way.  I love my mom for making the delicious food anyway and for getting Boo a beautiful Easter basket anyway, but I also fight to stay grateful – especially, for some reason, on Easter.  I see little kids all dressed up and going to church after their Easter Egg hunts…I am jealous of that whole piece.

I didn’t even go to church on Easter myself.  My favorite priest is retired and gone, and I wanted his Easter homily only.  I am a one-priest-Catholic, I guess. And now, I love Pope Francis.  His humility and simplicity – his gentle ways, his appeal for peace, for the poor, for the helpless.  It’s not as if I am a good Catholic – or a good anything, for that matter.  But this pope makes me want to identify myself with Catholicism more than any pope before him that I can remember.  I like to keep abreast of what he’s doing and I’m so happy that, whether people are Catholic or not, what he says and does will be a big influence on the world.  We could all use a leader with a little humility, if you ask me.

Anyway.  I don’t really like holidays anymore.  My favorite holiday is sleep.

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“And this is why my eyes are closed
It’s just as well for all I’ve seen
And so it goes, and so it goes
And you’re the only one who knows

“So I would choose to be with you
That’s if the choice were mine to make
But you can make decisions too
And you can have this heart to break

And so it goes, and so it goes
And you’re the only one who knows…”

And So it Goes, Billy Joel

The phrase “and so it goes” appears 106 times in Kurt Vonnegut Jr’s book Slaughterhouse Five.   The story continually employs the refrain “so it goes” when death, dying, and mortality occur, as a narrative transition to another subject, and to explain the unexplained. (from wikipedia)

This morning was the first of 5 doctor visits for Boo up here in Albany…and each time he’ll be escorted by his peeps, E & J.  Today we saw Dr. S, the glaucoma doc who is borderline strange but quite efficient, matter of fact, businesslike,  and nonplussed * unaffected by Jonah’s colorful personality. 

The nurses and staff all know us by now and are very kind to Jonah.  When we go there we wait in the hallway outside so Jonah can pace around, and they come out to get us when doc is ready.  In the meantime Jonah frolics in the hallway, crouching and running and shouting happily.  He loves E & J.   I love them too.

J put gloves on Jonah, and they played high five and gimme the pound, bumping fists.  Jonah’s getting to be such a good boy at his doctor appointments.  He is brave and sweet and funny.  Even if I’m under some sort of mother-spell skewing my perception completely, it feels good to have seen him, all lovey and silly.  Precious Boo.

He’ll need another eye operation; they want to take the Reticert implant out.  It’s been there 2 1/2 years now and Dr. S wants it out soon, so Jonah will have another appointment with Dr. S, but first an appointment at the pediatric rheumatologist, a pre-op appointment at the eye surgeons, then the surgery itself, then follow up appointments, etc.  Can you imagine if I didn’t have E & J?  Andy or I would have to pick him up and drop him back off every time.  The transportation to and from doctor appointments, paired with two individuals like J & E, is an invaluable service and responsibility.  I have no idea how they do it.  Thank God they do.

You probably can’t tell, but he’s laughing his head off here, wearing his exam gloves and knocking on the door three times, shouting “knock knock knock!” each time.  Little peanut butter, E calls him. He wanted me to give him noogie and knock knock knock lightly on his noggin, silly with giggles and ready for mischief.  Wan go van? he’d ask J on occasion, and J would distract him with lists of delicious things to eat:  french fries!  pizza!  bleu cheese! circle pepperoni

When it was time to go I kissed Jonah soundly as he settled into his cushion-y nest they’d made for him in the back of the van.  I entrust him to others. 

I have to, but with E & J, I am actually glad to. 

* I believe that most people misuse the word “nonplussed” – including me.  I always thought it meant “unfazed.”  Turns out it means exactly the opposite.  

So it goes.



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It is Jonah Russell’s 10th birthday today, and time itself must be bending and twisting and teasing me, because I just can’t wrap my mind around that.  I’m off work from noon today until next week.  I was going to drive down to see Jonah after I got off work, but I’m recovering from an ugly stomach bug (I didn’t go to work at all Monday) and don’t want to bring it to him (if he didn’t bring it to me). Plus, I don’t want to upset his special day with an unexpected visit – he won’t comprehend why I’m there.  They’ll have a pizza and cake party for him tonight — and he even gets a present or two.

We had our own birthday party for him at grandma’s house on Saturday; Andy drove him up and grandma had gotten him balloons, all his favorite foods, and cake with chocolate frosting.

Tomorrow morning M and I are flying to Denver, Colorado to see Guster play with the Colorado Symphony Orchestra.  Then back home for two more acoustic shows before (sob) the tour is over.  There is a reason my son learned to sing one of their most complicated songs.  If you click on –> Keep it Together you can see a You Tube video of him singing it, and in pretty good tune & rhythm, when he was 7 — at a time when his verbal language consisted entirely of two-word phrases. (Sorry to long-time readers who’ve heard me say this a dozen or so times).  I guess I brainwashed the child; he was certainly unresistant.  And so together we live happily ever after in Gusterland.

I just sent their album Keep It Together, in fact, to the awesome nursing staff who drive him to doctor appointments.  It was their idea; they said they’d play it in the van for him.  I’m so grateful for the kindness of those who have my son in their care.  There is no better gift to me than to nurture, teach, play with, care for, and maybe even love my little Boo.

PAUSE

At that moment the nurse at his school called to tell me Jonah required another two-person takedown today, after it happening twice yesterday.  I called his glaucoma doc yesterday to ask if the new meds he’d given him (eye drops) could cause pain or increase aggression but they told me no.

I don’t know if I believe this.

I’m going to ask a good doc I know, though, and look into it some.  I don’t want my boy to be in pain, or feeling this compulsion to aggress anymore.

What is it, bunny?  What can I do to make this world softer, better, more tolerable for you?

Sometimes I get mad.  It’s like that scene from Rainman where Raymond’s younger brother Charlie, played by Tom Cruise, loses it while driving in the desert and Raymond insists on purchasing underwear at a K-Mart 5 or 6 states away.  Charlie screeches the car to a halt, throws himself out onto the empty road, and paces wildly, ranting to the desert before returning to his brother, screaming, “You know what I think, Ray? I think this autism is a bunch of shit!  Because you can’t tell me that you’re not in there somewhere!”

It’s the whole theme of the movie, and sometimes the theme of the frustration I feel when I can’t communicate with Jonah the way I wish I could.  Our bright, amazing, incredible little boy has such violent aggressions – and now juvenile arthritis and glaucoma to boot.  It ain’t fair.  He’s so brave.

Despite everything, little Boo, you are ten today — and I love you more than the earth and sky.

Baby Jonah, 2002

Happy Birthday, Sweetheart…

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Andy and I Jonah and I left Albany at 6am last Tuesday to bring Jonah to Boston Children’s Hospital for a 9am appointment with a pediatric rheumatologist (because even though we live in the pretty little capital city of New York State, there are zero pediatric rheumatologists here).   Jonah has been limping and was clinically diagnosed with pediatric juvenile arthritis based on other health problems like synovitis in his hip and jaw, and iritis/uveitis in his left eye.

In February of 2010 little boo had an operation on that eye to replace the lens, and they implanted something called Retisert to constantly dispense small doses of steroids locally.  When we got him home and the anesthesia wore off completely, I took a picture of him in his misery.  I guess I wanted to record it while desperate to alleviate it.

I hate this picture.

This was the only time in his little life that he verbally expressed pain to us:  eye hurt, he cried – just once – as if agony could forcibly pull language out of him.

We gave him medicine and I rocked him in my arms, wishing I could fix everything.  Turns out we can’t fix his arthritis either – but it’s mild, they told us, and naproxen should be able to help him with his limping and any associated pain.  They told us neither his eye nor his arthritis would cause his aggressions.  Nobody can tell us what causes the violence exploding like mines inside him, timed to a schedule so erratic it has no business being associated with time at all.

The three hour trip to Boston was okay – we’d given him sedatives the doc had prescribed – and we managed to get him in and out of the short appointment without any major aggressions.  It is undoubtedly an amazing hospital, even aesthetically, complete with musical steps, bubbling walls, and God knows what else we didn’t see because we were in and out of there so quickly.  On the ride home we had to pull over three or four times because Jonah went bezerk.  Andy ended up in the backseat with him, holding him, getting his own arms scratched to hell.  There was virtually no conversation there or back.  We were collectively frazzled – got back into town around 3.

After I dropped Andy and Jonah at the house I went home to my apartment where sweet Jack Ingalls was waiting,

and I lay across the bed, trying to make myself think of nothing.

“The things that I’ve loved; the things that I’ve lost
The things I’ve held sacred that I’ve dropped
I won’t lie no more, you can bet
I don’t want to learn what I’ll need to forget…”

~ Audioslave again, “Doesn’t Remind Me”

I can’t write anything else right now.

I’ll come back.

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