Aurora Borealis

Yesterday was a red letter day at our house.  Miss A. got the Agent ready to go to the playground.  Then the handyman showed up.  (We had a list of miscellaneous things that needed attention — doors that were sticking, doors that weren’t latching, a doorbell that worked only intermittently, etc.)  Agent Murphy was fascinated and decided he’d rather watch Mr. Chip work than go to the playground.  (They went today instead.)  As if that wasn’t enough, then the lawn guys showed up, so the Agent had to run from window to window to watch them work.  Agent Murphy and Miss A. took some mail out to the mailbox and saw that people up the street were having some tree limbs trimmed, so they watched that for a while.  And the garbage truck came yesterday, too.

This afternoon it started raining and Agent Murphy pointed excitedly out the window.  Then he ran off to his room and came back with one of his issues of High Five! magazine that we’ve been reading a lot lately.  He had it open to the poem called “Rain Party” about a bunch of frogs playing in the rain.  He pointed to the poem and then out the window again.  I’m continually amazed at how the little guy’s mind works and how smart he is.  There’s so much going on in his head.  It’ll be so much better for him (and us) when he can make this talking thing work.

Well, where to start?  He’s been more willing recently to try out sounds.  He’s started saying, “Go!” pretty clearly to get The Dog to go away from the table; unfortunately, she doesn’t really listen to his sweet little voice.  At therapy today he worked on 2-word sequences — verb and noun (like “roll ball”) — with pictures.  His therapist reported he did start getting frustrated. 

A while ago, at our old house, we tried a refrigerator lock to keep him out of the fridge.  We followed all the installation instructions, let it “cure” a full 24 hours before engaging it, etc.  The first time the Agent yanked on the refrigerator door after the lock was engaged, he flat out broke it.  We got a different lock, and finally got around to installing it the other day.  Shortly after we started engaging it, Mr. Tldz reported: “The good news is Agent Murphy won’t break the new lock.  The bad news is he knows how to operate it.”  So now he routinely opens and re-locks the lock for us when we need to get stuff out of the fridge.

These days, when Mr. Tldz puts a meal on the table, he sends Agent Murphy down the hall to the bedroom to tell me it’s ready.  He looks at me expectantly, and when I ask if lunch or whatever is ready, he says, “Yeah!”.  He had been running down the hall ahead of me, but in the last day or two he’s decided that he must take my hand and walk me down the hall.  My sweet little escort.

In a very exciting development, Agent Murphy seems to be heading down the path of potty training himself.  The other day the babysitter reported that he had indicated a desire to go into the bathroom.  So she put his seat up on the toilet and he peed in the toilet.  Today she reported that he did that three times this morning.  Aunty N. took him to speech therapy today, and when he got home, Daddy commented that he probably needed his diaper changed.  I asked Agent Murphy if he wanted to go potty.  He said, “Yeah,” so Daddy took him into the bathroom.  Daddy came back and reported that the Agent peed in the toilet, and that his diaper, which was last changed nearly 2 hours before, was pretty much dry; it may have been very slightly damp.  Then, when it was time to get ready for bed, Agent Murphy peed on the toilet again, and his diaper was dry again.  What a big boy!

I know it can be harder to get a kid to poop on the toilet, but hopefully if this keeps up, once we get settled in with Garbanzo and can actually focus on toilet training a little bit, maybe this will come together.

Aunty N. took Agent Murphy to speech therapy yesterday, his first time since May 3 — the day before this bedrest saga started.  His therapist says the break may have done him good, because he did really well.  We went back to an hour-long session instead of two 30-minute sessions.  He got a good 45 minutes in.  Miss L. says we should work particularly on the S sound, the W sound, and the H sound this week.  (We’re supposed to pinch his nose when working on S, because apparently yesterday he was trying to inhale instead of exhaling to make the sound.)  He just recently got a kittens book that he likes — it’s just pictures of a bunch of different kittens with their names.  And there are a lot of S sounds in the names, so that will help.

Today Mr. Tldz offered Agent Murphy a choice of animal crackers or gold fish for a snack.  The Agent indicated goldfish.  Mr. Tldz said “fish” a few times, and then Agent Murphy said it once.  Mr. Tldz said he heard all the sounds.  So the little guy is definitely on board with trying more.

As for the potty…  My plan had been to make a pretty intense effort at toilet training in May-July to see where we’d get by the time Garbanzo arrives.  Well, obviously that plan has changed, since I can’t really be chasing after the Agent and cleaning up accidents these days.  So we’re continuing with a low-key approach.  We still have his step-up potty seat in his bathroom, and he likes to sit on it.  He sits on it after bathtime every night, and a few times Mr. Tldz has been pretty sure that Agent Murphy has peed in the toilet.  And this morning the babysitter reported that the Agent indicated a desire to sit on the toilet, and then he peed!  Hooray, big boy!  Hopefully if we can just keep going at this level, once we get settled in with Garbanzo Bean at home finalizing potty training will come relatively quickly.

We sat on the front porch for a while this afternoon and watched the heavy rain come down.  Then Agent Murphy got to play with some toys from the special shelf, on top of his bookcase.  Tonight he played with Rufus, the stuffed red wolf (He was a table decoration at the wedding of Mr. Tldz’s groomsman.), and Hildegard, the stuffed German Shorthaired Pointer that we got because that’s The Dog’s breed and Hildegard looks a lot like The Dog.  Rufus and Hildegard seem to be pretty cozy with each other.

Agent Murphy kept pointing between Hildegard and The Dog and saying, “Yeah” or “Uh huh.”  Point to Hildegard’s head, point to The Dog’s head.  Point to Hildegard’s back, point to The Dog’s back.  Point to Hildegard’s ear, point to The Dog’s ear…  I wonder how long the likeness will keep him fascinated? It was cute.

And we read and re-read lots of books today.  Lately the Curious George board books have been very popular, but today we were quite into Once Upon a Potty until Mommy said I needed a break from pee-pee and poo-poo.  Row, Row, Row Your Boat was big today, too.  The Agent has been more willing to make and immitate sounds lately.  He says “Row row,” though it usually sounds more like “Woe woe.”  And he’s adding to his animal sounds — his standard “Aarrr” for a dinosaur, and now he has an impressive lion’s roar, and he barks like a dog and AT his dog, and he’s trying to quack like a duck, which sounds like “Kak kak.”

We’ve had our occasional babysitter in every morning this week from 8-12 to look after Agent Murpy.  Originally that was so Mr. Tldz could work and now it’s so he can job search, etc.  She’s been taking him to the playground for extended periods each day and he’s been running himself ragged so he takes a good nap.  That’s a very good thing.  Now he’s decided outside is just the place to be and that he’s supposed to go to the playground every day.  When he’s not at the playground, he wants to be on the swingset in our backyard or riding his little car around the deck.  I hear him out back playing with Mr. Tldz now.

Unfortunately the babysitter is leaving town for a few months due to some personal stuff she has going on.  But we’ve hired a graduating (tomorrow) high school senior for the summer to come in 4 hours a day during the week and look after the Agent.  We’ll start with 8-12 and shift her hours as we need to in order to accommodate any interviews Mr. Tldz gets.  AS starts on Monday.  (Acutally, she watched him for about an hour on Tuesday afternoon because Mr. Tldz had scheduled a phone meeting with his boss; but that took a different turn — that’s when he learned his position, and really his group, is going away.)

Anyway, things continue to be stable with me and Garbanzo Bean, as far as we can tell.  And I’m managing to keep myself reaonably occupied.  I haven’t gone insane yet!  (At least not anymore than I already was.)  We made it to 30 weeks 4 days.  I really want to get to 35 weeks and then see how close we can get to 37.

The guys just came in.  Mr. Tldz reports that Agent Murphy did a good job calling his dog by name.  He patted his leg (the sign for dog) while saying “Aaah.”  Apparently they went down to the bottom of the stairs where she was and she barked at them.  So the Agent barked back, which caused The Dog to whimper. 

I don’t think I ever closed the loop on this…  Fortunately, Aetna came around pretty quickly after being bombarded with a blizzard of documentation from our therapist and are continuing to cover the Agent’s sessions.  (Interestingly, when I called to find out a response, the rep I spoke with seemed very surprised by my question and said there was no question in the file — it was marked “no reauthorization necessary” or something like that.  She did note that some claims (the ones that had been denied) had been reprocessed.  She said, “Well let’s see the date on the ‘no reauthorization needed’ note….  Hmm.  There’s no date.  They alway date these entries.”  A little CYA, anyone?)

So he’s using the little loaner talking machine, mostly at therapy and a little bit at home.  We have his communications book of pictures at home and we’re using it more and more as we figure out how to incorporate it into our routine.  He’s plenty willing to also use signs in therapy, and even vocalize in therapy a little more.  His therapist thinks it may be because he feels less pressure now that he has a ‘plan B’ so he’s willing to try vocalizing.

At home, he’s saying “no” a lot more clearly.  (Figures, right?)  And he says “up” – sort of.  If I’m sitting at the table or wherever and he wants me to get him something, he’ll point up in the air and say “Uuh.”  And he’ll tell us that a dinosaur says, “Arrrr!”  So this is at least some progress, though of course we’d like to see more.

I don’t think insurance companies should be demonized the way the Democrats have been doing; but they indeed have their problems and can be very annoying and short-sighted.

Agent Murphy had his regular speech therapy on Monday.  After we got home, the CHOA location we go to contacted us to tell us they had just been informed by Aetna that all the visits since the beginning of February are being denied.  Mind you, the therapy site contacted Aetna sometime in December to re-verify benefits for 2010 and were told everything is fine and we’re covered for 60 visits per calendar year.  He’s had maybe 13 so far in 2010.  And all the appointments in January processed normally.  By the time I spoke with the insurance specialist, Candy, at the therapy office, she told me our therapist was already going to war pulling together information on medical necessity.  She was drafting a letting about it which she was going to get over to our pediatrician’s office so they can sign off on it too.

Candy asked me to call Aetna to find out what I could from my end while they start the appeal process.  I spoke with Lisa C. at Aetna, who informed me that after some number of visits billed under the same treatment code, they want additional information to find out if the treatment will bring the patient to a “restorative state” before they continue to pay.  She said I was in a good position if the provider was going to go to bat on the Agent’s behalf, because they’ll have all the medical documentation Aetna is looking for.  Her sense was that when they have the documentation they’ll go back and pick up all the denied claims and reevaluate them.

Well, okay, wanting to know if a course of treatment is effective rather than futile makes sense.  But is denying coverage to force an appeal the only way we can accomplish that?  How about a simple request to provide certain medical documentation by a certain date, after which treatment won’t be covered until the documentation is provided?  No, no.  We can’t do anything so reasonable.  Just deny the claims.  And interrupt the treatment.  (Unfortunately, Candy was out sick today so I couldn’t talk to her about whether we should keep proceeding with his visits normally or suspend them until this is resolved; so the person I did speak with suggested that it was best to be safe and cancel tomorrow’s appointment and then get better guidance from Candy when she’s back.  Fact is, if they’re going to end up denying coverage in spite of the documentation, we can’t afford to be on the hook for more than we already are; even on the covered visits, we’ve still paid a pretty penny.)  Of course, we’ve just started gaining some momentum since introducing the communications book and device.  And I hope this interruption doesn’t mess that up.  Fabulous, right?  We’re not sure if this treatment is effective enough, so we’re going to interrupt it and make it less effective.  Stupid, stupid, stupid.

Anyway, we did get our communications book from Miss Lindsay on Monday and we need to start using that at home.  (We need to make braille labels on it for Daddy, too.)  The plan is to primarily use the book at home and the device (the loaner) in therapy.  Yesterday Agent Murphy did really well using the device.  And he’s even trying to say the word himself when he pushes the appropriate picture.  Miss Lindsay’s theory is that with the device as back up, he’s less frustrated about not being able to make all the sounds so he’s more willing to try them.

Today Agent Murphy went for an AAC evaluation because he’s been at something of an impasse in his speech therapy lately.  He won’t consistently use the signs he knows, he won’t consistently even try to imitate sounds (let alone get the right ones), so his speech therapist wanted the AAC specialist to evaluate him to determine if there’s anything else that might help him communicate while we keep working on speech.

Today’s therapist agreed with us that he understands a lot.  She said when she sees such a big gap between comprehension and expression, she expects there’s something oral-motor going on.  She agrees with our speech therapist’s unofficial diagnosis of apraxia — an inability to make a particular sound on cue.  Apparently it’s something you might see in adults who’ve had a stroke.  They can make all sorts of sounds and say lots of words, but if you say something to them like, “Say ‘mother’” they struggle and think really hard and can’t say it.  And then an hour later they’ll just blurt out “Mother.”

An occupational therapist observed his session today, too, and she said she thinks he might have slightly low tone in his facial muscles; but nothing that seems to require intervention now.  We’re just supposed to keep working with him on imitating sounds and such.

And we’re going to work on putting together a communications book for him — pictures of various things in different categories that he can use to communicate.  They also loaned us a basic communications device to see if he’ll get passed the stage of “let’s just push all the buttons” and actually consider using it more reliably to communicate.  Her preference, like mine, is to stay pretty low-tech with assistive stuff at this point, given that he’s still pretty young and hopefully will start vocalizing more.  (Of course, he vocalizes much more at home than he ever does in therapy; but it’s all still pretty random.  Although he does seem to be learning to say “No” — like when we tell him he has time out — though it’s a bit more like “Nuh.”)

We’re supposed to see the AAC specialist again in about 6 months to see where we are and if we need to change course.

So last week we started going to therapy twice a week for 30 minute sessions instead of 1 1-hour session each week.  Seems like that might work well for the Agent.  He can’t really focus for a full hour, so he’s actually getting more out of the sum of the two shorter sessions than the 1 session.  He’s starting to be more willing to vocalize some vowel sounds on command, but it’s a struggle for him and often he can’t get quite the right sound.  He tried real hard today, though.

We had a little bit of progress today for the first time in what seems like a long time.  We tried food as a motivator, and surprise, surprise, that worked for our little guy!  He’d do lots of stuff to get another bite of Daddy’s homemade sourdough bread.  He’s still not vocalizing a whole lot for the therapist, though while they were playing with a wind-up puppy dog he did try panting like a dog when she did.  And he’s more willing to let her touch his hands to show him how to make different signs than he was before.  He learned the sign for “eat” really quickly today, and he kind of picked up “bread” and “block” today, too.  He’s more willing to look at me and immitate the signs I’m making than the therapist, which I guess is just fine since I’m with him all the time.

Maybe we will get to words one of these days.  It would be nice.