Saturday, December 31, 2011

Hard Lessons

Well, I thought it must have been over a month since I've updated everyone, but I see that I did the last update on Dec 2.  Yaay!  Two updates in a month!

On the way into town for Caleb's well child
check and Ethan's blood pressure check.
Okay, Okay, I know.  I have been slacking, haven't I?  In part there's a good reason for that.  Historically, I tend to update Ethan's blog in the early morning, usually after he's woken me up in the middle of the night and I can't get back to sleep.  But over the last 3-4 weeks Ethan's been SLEEPING THROUGH THE NIGHT!  What?  You didn't quite catch that?  Let me say it again.


He's made all kinds of progress and we're super proud of him--and oh, so thankful!

What made the difference?  Over the last 4-5 weeks, we've just tried to identify and eliminate as many of the possible problem areas as we could.  We took the top bunk from Caleb's bunk bed and put that in Ethan's room.That helped a lot because the top bunk had nice rails that prevent him from climbing out too easily.  The step up from a toddler bed to a twin size also allowed us to slide into the bed next to him instead of getting him up and bringing him into our bed.  We've started to interest him in a teddy bear and we make sure that he's got the bear and one or two other animals to snuggle with at night. We put an under-the-sheet mattress warmer on the bed, so if he throws the blanket off at night, he doesn't get too cold. 

Clackamas VFD Operation Santa Clause
We also pay careful attention to how much sleep he gets.  He's usually asleep by 9.  If he wakes up before 8, we'll usually try to get him a nap in the early afternoon.  If he wakes up much after 8, we'll try not to give him a nap. If we do give him a nap then, it'll usually come back to haunt us, because it will almost take him just that much extra time to get to sleep that night. 

Over the last couple of weeks we've started tapering his benadryl at bed time.  So far he hasn't noticed or reacted and he's still getting to bed well.   From talking with the other MPS parents, we think there may come a point where we take him off the benadryl but need to put him back on melatonin.  That would be okay.  Melatonin is a chemical that the body produces naturally; having him on that long-term would be less troubling and better for him than having him on the benadryl,

He's made a ton of progress, and frankly, more quickly than I would have thought or hoped.  We're really proud of him. 

Baking cookies for Santa!

Transplant Stuff
Washing the family car
More progress here.  Ethan's been on a ten week taper of his immune suppressants.  His last day on immune suppressants is January 4!!  Once he's off of the immune suppressants, we'll start weaning him off some of the other drugs.  For example, he's been taking a magnesium supplement because the immune suppressant makes him loose magnesium.  As his immune suppressant dose has come down, he's needed less and less magnesium.  That's super good because magnesium is also a laxative. As you might imagine, we'll be happy when he's off of it.  On the downside, while he's coming off the immune suppressant, he needs less magnesium.  But he's only getting blood work every third week right now, so we only have a benchmark on that magnesium dose every three weeks, soon after that lab result, we're back giving him more magnesium than he needs.  Having too much magnesium in one's system is not a bad thing, it just comes out as more diarrhea.  
Oy vey!!  More !

The other part of coming off the immune suppressant is that once he comes off of it, the docs have cleared him to start pre-school again.  It doesn't mean that his immune system is back to normal.  It will take 3-5 years for his immune system to be as strong as yours or mine.  But it's stronger and hopefully strong enough.

At some point in January, we'll probably start him in an early intervention pre-school program that's run by the school district here.  It's only two hours twice a week.  But it will be so great for him to be able to play with other kids.  Even more importantly, it will be so fantastic for him to be able to learn from other kids!

In Other News
Following up on the last post:  After Ethan's November CT scan revealed no new or growing pulmonary granuloma, Ethan's Minnesota doc said we could stop his Voriconazole (anti-fungal) medication and do a final CT scan in mid-January.  More on that, below.

3 steps forward + X steps backwards = Y     Solve for Y*
(*Yeah, I've got no frickin' idea either.)

Ethan inpatient.  Four pokes to get
that IV line in. Poor guy.
December also brought some new and challenging surprises for Ethan and for us.

Early in the month, I took Ethan to a dentist appointment for his regular cleaning.  It wasn't long after she started looking in his mouth that she said he'll need dental surgery to place between 4 and 8 crowns. 

Dental care for Ethan is really challenging.  Two rounds of chemo and radiation therapy weakens the enamel and dentin in the teeth, and one of articles I've read suggests that the chemical changes brought about by MPS weakens them as well.  In addition, MPS causes a range of abnormalities in dental development and how the teeth come in.  In Ethan's case, his top and bottom teeth haven't so much grown down out of his gums as they have pushed forward out of his gum line.  As a result his front teeth on the top and bottom are basically where the gums are in a normal mouth.  The fronts have come out, but the backs are still under the gums.  Because of the way they come it, it's really hard to get at them with a tooth brush, essentially you have to pull the lip forward and fit the tooth brush into a small space in front of the teeth at the top and bottom of his mouth. 

I know all of the structural and medical reasons that contribute to his teeth being in crappy shape.  But I still can't feel like at least part of this is our fault--that part of it was preventable and would have been prevented if we'd done a better job.   

Intellectually, I know that Ethan's got something wrong with almost every system in his body.  We're trying to track and manage quite a bit.  But when I look at Ethan and think about all that he's had to go through, I get really sad when I think that he'll be subjected to even more because we didn't do as good of a job as we should have. 

Anywho, we're working to schedule Ethan's dental surgery at the other children's hospital in town, Legacy Emanuel, for January 11 and we're trying to schedule the final CT scan at the same time so that Ethan's only got to do one sedation.  (More on that later, too.)

Return of the Blotchy Skin
November and December, here, were particularly cold and dry.  The weather outside combined with the dry furnace air inside meant the return of the eczema that we battled with last winter.

It's taken some time for me to realize what we're really dealing with here, because last fall and early last winter the docs here in Oregon looked at the rash and said it could be eczema or it could be graft vs host disease. They're treated differently, so not knowing what it was left us unable to treat it as aggressively as we could have.  It wasn't until we got to Minnesota and the dermatology department did a skin biopsy that we got a solid diagnosis of eczema.  Once we had that we were able to use a topical steroid that helped clear it up really quickly. 

Our transplant doc here noticed the rash in early December and wondered aloud if it could be eczema or graft vs host.  In my mind, there wasn't any question we were dealing with eczema.  A few reasons for this, first the timing was the same as we saw last year, the presentation, including the dry itchy scalp was the same as we saw last year, and Minnesota has said that they never see graft vs host with this protocol because of the delayed T-cell recovery.

Unfortunately, determining what it was turned out to be less than half the battle; the more important part was treating it aggressively and getting ahead of it. And we didn't do that.

We started upping the frequency of Ethan's bath's and the viscosity of the creams we use on his skin and scalp.  The idea is to open the pores in a warm bath and then pop him out of the tub and cover him in a skin creme that's as thick as vaseline to seal that moisture into his skin.  Eventually, we were at baths every day and had started using the steroid oil that we had left over from last winter.  By this past Sunday and Monday his skin was looking much, much better.  Unfortunately, we discovered that we hadn't caught it quickly enough.

Tuesday, Ethan started developing some lesions on his back.  Sarah said that they looked much like chicken pox lesions.  It's not uncommon for transplant patients to develop chicken pox. The chicken pox vaccine is a live vaccine and live cells can live for years in nerve endings or other parts of the body and can cause an outbreak when the body's immune system is weakened.  Sarah took a couple of pictures of Ethan's back and we sent them up to the transplant clinic for them to take a look.  They said we should come on in (surprise! (not!!)), and Ethan got into clinic about 3 o'clock Tuesday afternoon. 

A couple of transplant docs looked at him and hemmed and hawed, "could be chicken pox, the lesions kind of look like chicken pox, but it could be something else.  We're not sure, but we're going to take some samples to culture and admit Ethan to start him on an IV anti-viral medication while we wait for a result."  So, around dinner time on Tuesday, we settled into our first in-patient stay since Ethan was discharged from transplant.  

Anyway, I was thankful that his condition wasn't more serious at this point, and it looked like it would be easy-time in the hospital. (Easy-Time - noun, toddism:  hospitalization for observation and/or treatment for a non-critical or long-term illness, esp. where Ethan's energy and mood are still quite good.)  If it was chicken pox, I felt that we'd caught it early enough to make a difference. The primary challenge seemed to be that Ethan was in a good mood and wasn't wild about being stuck in isolation because they were afraid he might spread chicken pox.

By the next morning, the lesions on his back looked a good bit better, but there were some new lesions on his legs.  That some of the lesions had faded and that they weren't spreading more quickly seemed to be suggest--to my uneducated brain, at least--that it wasn't chicken pox.  Later that day we learned that one of the cultures had come back positive for a relatively weak bacterial infection.  The doctors started leaning towards the idea that the lesions might be foliculitus, a bacterial infection of the hair follicle.  My theory is that the eczema, with our without some scratching on his part, had weakened the skin and that the bacteria had gotten in or under the first couple of layers of skin.  

Because the bacteria strain was pretty weak, the doctors still wanted to confirm that Ethan didn't have chicken pox.  So they kept us in the hospital one more night so Ethan could receive a couple of additional doses of the IV antiviral.  They released him Thursday morning with prescriptions for topical and oral antibiotics as well as an oral antiviral.  They said to keep taking the antiviral until we got the final results of the viral culture.  Just as I was writing this, we got a call to let us know that the viral culture came back negative, confirming that it was not chicken pox.  So now we can stop the antiviral med.

I was very glad that our stay in the hospital was pretty short.  And I was thrilled to see that Ethan's new sleep skills were paying big dividends in the hospital.  Ethan did a fantastic job both nights getting to sleep, and when the nurses would come in overnight and mess with him and wake him up a bit, I was awestruck to see him growl, roll over and GO BACK TO SLEEP.  It was a-maz-ing!!  (If you get the impression that we're really happy about this development, you'd be right!!)

Interestingly, it was also about 54 weeks since we'd been in-patient at Doernbecher.  That stay was keep an eye on him while he fought through a respiratory virus that he'd developed.  But throughout that period and then into January we were fighting a rash on Ethan's chest that he had scratched until it bled and the fact that he kept scratching off the dressing for his central line.  I know that all of this is a learning process, but between the eczema and his teeth it's discouraging to always be playing catch up.  All of this leads me to believe that we need to get much more aggressive in looking at little things and understanding that they are very likely to turn into larger problems unless we address them quickly and strongly.  

On Again - Off Again Dental Surgery
While were inpatient, Ethan's dentist was having a conversation with his doctor in Minnesota about the upcoming dental surgery.  Our dentist wanted to confirm there were no medication conflicts.  During the conversation our Minnesota doc mentioned the chicken pox question to the dentist.  Then the dentist relayed that to the hospital where we are scheduled for surgery and they said, well, he can't come here in mid-January for surgery if he's just had chicken pox, we can't expose our surgical patients and staff.  

Potentially that would have meant that Ethan would have had to have a sedation in January for the CT scan and then a second sedation in February for the dental surgery.  Now that we've got the final tests results, I've got to pass along the test results and settle that question so we can move ahead with both on the 11th. 

Christmas Holiday
Ethan showing off his binky collection.
In and amongst all of this, we had a fantastic Christmas.  My mother and step-father came up from Florida and stayed with us for two weeks.    It's always good to see them.  Not only do we enjoy their company, but they really spoil us, cooking great meals, helping out with the kids and around the house.  Whenever they leave, it takes me a couple of days to get back up to speed!

Sarah took some time off of work, and Caleb's Christmas vacation started at the same time.  So the week before Christmas, everybody was home,  Ethan's had a fantastic time with all these people around.  It's been amazing and fun to watch Ethan these last two weeks.  It's really highlighted just how communicative he is, even though he's largely non-verbal.

One evening, we all went out together to take the dog for a walk.  Now the thing you need to understand here is that when Ethan walks anywhere he likes to have pretend races.  He'll find a line in the pavement, and he'll line up at the line, or hell get down in a runners starting stance;  then he'll motion and gesture for YOU to line up on the line.  Then he'll say "Ready?  Go!!"  and you're off to the next line in the pavement/carpet/road, which is the finish line and the starting line for the next race. 

So Caleb's on his bike, but Ethan is walking with me, Sarah and two of his grandparents; and he's directing all of us, nonverbally!  "Stop here on this line.  No, Grandpa, come back here and line up with everyone. Everybody line up next to each other." Then it's, "Ready?  Go!!!"  and we all shuffle to the next line and do it all over again.  We must have walked 1/3 of a mile that way!  It was a hoot!

Last night, Ethan was in Caleb's room with Sarah.  Ethan had his new T-ball set and he was directing Sarah how to use it and was fielding the balls.  He'd put the ball on the T, then tell Sarah to hit it.  She'd hit it, Ethan would throw his arms up and cheer "Yaay!!"  then would chase after the ball, carefully put it back on the T and tell her to "Go!" again.  

It's been fantastic to watch!  I also think that it highlights the disparity between Ethan's cognitive ability and his functional ability on tests.  I've started to think that Ethan is between 2 1/2 and 3 in his cognitive understanding of the world around him.  He seems to be closer to 2 in his functional ability, things like daily life skills: getting dressed, brushing teeth, drawing, completing tasks, etc..  And he may be closer to 1 1/2 in his emotional maturity, his ability to interpret and respond to stimuli that he likes or dislikes.  

I can't tell you what a relief it is to see him do activities like this that demonstrate a good level of cognition. As Ethan gets older, I'm reasonably comfortable with our collective ability to help him develop and work through his functional and adaptive challenges--as long as he's got the underlying intelligence to do it in the first place.  Seeing him do things like this fills me with a great deal of hope for the future. 

Caleb's cool truck!!
Caleb had a very good Christmas too.  In the days before Santa came, Caleb got the idea that the more presents he gave, the more presents Santa would give him.  He started wrapping up a lot of his old toys so he could give them to Ethan.  In our Christmas stockings, each of us also found a gift wrapped rock straight from Caleb's rock collection.  Unfortunately, it didn't work and Santa did not bring more toys as a result of Caleb's generosity.  But Caleb did get the scale model tanker truck that he wanted, and he's become a pretty good present wrapper to boot.  Caleb said it was his best Christmas ever!  I can live with that!

On that happy note, I think I'll end this update.  Merry Chrishanukwanza and a happy new year.  Here's hoping we all have a happy and healthy 2012.

Friday, December 2, 2011

Good Progress, No Progress, and Slow Progress (All of the Above)

I know, I know.  I promised an update "next week", and that was five weeks ago.  In my defense I didn't get the final report from Minnesota until the third week of November, and then we had Thanksgiving, and then we had Caleb's birthday... Blah, blah, blah, yadda, yadda, yadda.

Anywho....  The big news around here has been

Caleb's Birthday!
And, yes, he did get all the candles out!
Mr. Big Man on Campus turned 7 years old on November 30th!  Yaay!!!

It was a small celebration, the four of us, together with Grandma Pat and Grandpa Bob, and our wonderful neighbors Steve and Susan.  Unfortunately, this summer Caleb decided that he didn't want to go to a couple of his friends' birthday parties and help them celebrate.  Since he hadn't gone to their parties, we decided not to have a party with friends this time.  Hopefully we can do that next year.

Regardless, Caleb seemed to have a great time.  Semi-trucks seem to have replaced trains as the big thing right now. Caleb was thrilled to get a couple of 2' long toy Kenworths.  He said that they will nicely complement his friend Ryan's Peterbilt.

The school calendar here has been sliced up a fair bit due to recession driven budget cutting.  Caleb's had more four day school weeks than he has five day school weeks.  Just yesterday, Sarah and I were saying that it's a good thing I'm home because it would be really tough to juggle all of Caleb's days off if we were both working.

When you look at this picture, don't
you feel like he's just humoring you?
Caleb is doing reasonably well in school.  He's enjoying science and math quite a bit.  Unfortunately, he's behind in reading, (and some frustration about that has made school less of a positive experience than we would like).   What concerns me a bit more about Caleb though is the fact that he doesn't seem to want to pursue the knowledge.  Somehow, reading just isn't important enough to him that he wants to work at it.

I am sure that eventually Caleb will learn to read pretty well and that he will catch up with his peers.  But with 30 other kids in his first grade class, and larger classes elsewhere in his school, Caleb is going to have to work hard to get an education.  His teachers won't just be able to hand it to him. He's going to have to go get it.  I'm not sure how to instill that in him.

(I'm sure that my mother is reading this, thinking "now you know what it was like for me."  Oh god, I hope Caleb does better in school than I did!)

Anyway, Caleb is off school again today (Friday).  Which means I've got both boys today. Sarah's at a choir retreat Saturday and Sunday, so it'll be the three of us all weekend.  I reckon that by the time Sarah gets home Sunday evening, I'll have locked myself in the closet and will be sitting on the floor, in the dark, rocking back and babbling incoherently. Oh well, it won't be the first time that's happened.

Ethan Update
Ethan with our cat Smokey.
Let's see, we got the following reports, results and summaries from the 6 month eval in Minnesota: neuropsych, chimerisms, blood enzyme levels, CT scan, neurology, ACTH stim test.  Then Ethan had a follow up CT scan here in the middle of November.

Where to start?  Where to start?

I'd already talked a little bit about Ethan's engraftment studies in the last post.  But those are the most important part of all of this, so to recap... The engraftment study follows two genetic markers.  The % donor for both markers had gone up since the last check in August.  As of mid-October, Ethan was 100% donor on the marker that signifies production of the enzyme he's missing, and he was 82% donor (up from 30%) on the marker that controls his T-cell production. (T-cells are a type of white blood cells.  As I understand it, there is some correlation between higher donor T-cell % and overall stability of the transplant/graft.  But I think that's a gross simplification and overstatement, so don't quote me on that.)

In-line with his strong engraftment numbers, his blood enzyme tests showed "normal levels" of the missing alpha-l-iduronidase in his blood.  (Unfortunately, "normal levels"  of the enzyme may turn out to be insufficient for these kids.  There's some evidence that post-transplant normal enzyme levels for Hurler's patients significantly slows further damage to their bodies, but that over the course of years the existing damage and perhaps residual storage material or a susceptibility to the accumulation of new material means that further damage can occur.  There is some talk among the researchers about whether or not administering regular IV synthetic enzyme doses to supplement what the body produces post transplant may be needed for these kids. )

Ignoring all the overly technical stuff, and the long-term what-ifs, Ethan's transplant is doing great, and we're really, really happy.

After the engraftment study, this was the appointment that I was most interested in.  After a two hour evaluation and conversation, I'm not sure that I came away with much more information than I had when we went in.

The short answer is that Ethan's development has more or less plateaued since he was evaluated for the pre-transplant workup in January. On the one hand, it's surprising because people say that Hurler's kids' pace of learning improves post transplant.  But, Sarah and I hadn't noticed much in the way of new skills or vocabulary development, so the results were about what we suspected.

I do think that the testing underestimates Ethan's intelligence, and perhaps how much he may be developing intellectually. The fact that Ethan doesn't talk yet, combined with some difficulty with his fine motor skills and magnified by the fact that he does not like and rarely cooperates with the testing, makes me think that the results may lag behind what his actual intellectual ability.

Even so, it is disappointing news on a couple of different levels.  Objectively, it's tough because the skills that he should be learning now are the ones that will help him learn more effectively when he goes to school.  So each month that he fails to progress mean that it will be harder for him to make progress later on.

Personally, the fact that Ethan hasn't made any progress in speaking is particularly difficult for me.  I've long said that I can work through all of the medical hoops and b.s. that we have to go through, but that at some point I want to have a conversation with my kid.  I want to talk with him and find out what he wants and what he thinks.  I can see the wheels turning in there.  I know he'd be great to talk to. But we never seem to get closer to having that chat.  It is certainly frustrating for Ethan as well, because he's only able to express the most basic needs or ideas.  While he is extremely expressive and his vocabulary and signs can cover his basic needs, he just doesn't have anything beyond that.

In the end, the lack of progress just highlights for me how little control we have over this disease and how much MPS completely sucks.

ACTH Stim Test
The stim test check's Ethan's adrenal insufficiency.

Ethan was on steroids for so long last fall that his adrenal gland stopped producing as sufficient steroid hormones of his own. That leaves him at risk, particularly when his body is stressed, of not being about to stimulate his body's response, which could lead to all kinds of serious and unfortunate stuff.

Over time, Ethan's adrenal gland has rebounded.  Ethan was able to come off of his daily dose of hydrocortisone a few months ago. The October test, showed his adrenal function was now normal, so that we no longer need to give him stress doses of hydrocortisone to help him through fevers or surgical procedures.

I never know quite what to make about neurology appointments at UMinn.  Theoretically, the neurologist is checking whether or not waste product (GAG) buildup in Ethan's central nervous system is impairing his function.

That's all well and good, right?

But Ethan's never shown signs of impairment, and the doctor neurologist who we work with at UMinn, frankly, seems to be phoning it in.  Each time, this guy sees Ethan, he comes in, hits him on his knees with a reflex hammer, makes him walk five feet and then we're done.   He doesn't offer much information about Ethan's relative condition, or likelihood that Ethan may develop some difficulty going forward.  He basically just hits him with his hammer and then he's outta there.

We were also referred to this guy last spring when we wanted to explore whether or not Ethan's sleep issues might be related to neurological changes in the brain of Hurler's patients.  When we went in to talk to this guy, he pulled up the PubMed database of medical research articles and showed us how to look there. I do think that anytime your doctor shows you how to research stuff on your own, that's an indication that the doctor has no idea and doesn't even care enough to do informed research on your behalf.

With that as background, you'll understand when I say that I didn't have high expectations for this exam.  I expected the doc to come in and hit him with his hammer and then we'd be done.  But when the doctor came in, he brought two medical students in with him to show them the "rare and difficult Hurler's case."  Normally, I welcome that because I'm all for teaching doctor's how to recognize and catch Hurler's early.

But in this case, I think the Neurology doc started to show off.  He went beyond normal diagnostic signs and then started putting Ethan through an abbreviated and pointless bit of neurodevelopmental questions. Well, I figured, if the doc is going to get into neurodevelopmental stuff, I'm going to pick his brain on neurodevelopmental stuff.  I figured it was pretty much outside of his area of knowledge, but if he wanted to pretend, then we'll see if he can actually tell me anything useful.   I grilled him about issues, therapeutic responses and outcomes for the next 15 minutes.  I didn't get anything out of him, which isn't surprising, because he didn't have any knowledge to give me.  Eventually, he slid his backpack on to his shoulders and edged out the door.

The moral of this story?  A lot of Hurler's families know a lot about the disease and have high expectations about the knowledge, understanding and experience that UMinn doctors should bring to the table.  We don't travel to Minnesota for the cross country skiing.  Don't try to examine my kid outside of your area of expertise if you don't know what you're talking about.  We've got better things to do with our time. I think the next time we need a neurological consult we'll go to someone else in the department.

CT Scan
Ethan had a sedated CT in Minnesota that showed two NEW granuloma in his lungs. Once again, Ethan's primary doc said he thought the images were just the result of lack of inflation in the lungs due to sedation, but that they had to follow it to ensure that the granuloma weren't indicative of an active infection.  All of which is a long way of saying that we had to have yet another sedated CT scan when we came back to Oregon to double check.  Fortunately, that scan came up negative.  They didn't see any granuloma in that location.  Ethan is still on a somewhat stronger anti-fungal medicine.

If we are lucky, the doc will take this as final evidence that the various granuloma were not signs of infection and we won't need to run another one down the road.  But I doubt it.  I expect Ethan will have at least one, and probably two, more sedated CTs before everything's said and done.

Blood Pressure
Ethan's had high blood pressure at least since he went on steroids last fall.   His current pressures are around 113/58, which puts him in the 99th percentile for his age, weight and height. Even so, his transplant doc here in Oregon, recently suggested that we reduce his blood pressure med by 1/3.  We checked in with Ethan's primary care pediatrician, who then consulted with a nephrologist.  They both suggested that we actually increase the dose by 1/3.

The issue here seems to be that the transplant doc is looking at his pressure within the range of normal for the patient population that she sees.  Meanwhile his primary care pediatrician and the nephrologist are looking at his pressure relative to the general population of kids.

What we've been told and the perspective we tend to agree with is that there's no point for his blood pressure to be that high if it can be better controlled by medication. At the same time, if we treat his high BP aggressively, then we need to be careful that it doesn't go too low as he continues to stabilize post-transplant.

Pediatric blood pressure monitors run more than $500.  Sarah and I have put appealed to our insurance company a couple of times to see if we could get approval to get a pediatric blood pressure monitor.  Unfortunately, it turns out that those are never approved.  So, even though Ethan only needs to go into the transplant clinic every other week right now, we need to go into our PCP's office on the off-weeks just to check his BP.   The only good thing about this is that it means I get to ride my bike some more as Ethan and I go to and from appointments. Sure it's winter, but you've got to get the miles where you can.  (I know, I'm kinda sick.)

I'm happy to report that we seem to be making some progress on Ethan's sleep issues.

We've focused a lot on changing the environmental issues.  We've taken the top bunk from Caleb's bunk beds and moved that into Ethan's room.  The side rails of the bunk bed keep Ethan from climbing out of it.  We've also added a mattress warmer so that he doesn't get cold and wake up if he kicks the covers off overnight.

Ethan's gotten really good at climbing into bed after we read stories.  Sarah or I climb in with him, but we can lay there quietly and read or doze off, and Ethan will put himself to sleep pretty quickly.

Most nights, Ethan will still wake up at least once in the middle of the night. With the bunk bed, we're able to climb in to be present for him and to keep him from getting up and wandering around the house.  He's still learning that we're not going to pick him up and sit with him to get him back to sleep in the middle of the night, and that he needs to put himself back to sleep.  He's at the point where he'll throw a tantrum in the hope that we'll cave. But the tantrums are usually only 45 minutes or an hour, down from the 2+ hour tantrums that we sometimes had when we were trying to put him back to sleep in our laps.

I'm pretty happy with the progress he's made, but we've still got months of work ahead of us.  We are still giving him benadryl to help him sleep.  But once we improve the behavioral parts of this, we'll start to scale that back and eventually eliminate it.

Bundled up for a cold and dark morning
In Other News
Outside of all of that, we're doing really well.  Sarah has kept up with her bike commuting through an unusually dry and cold fall. After being off of the bike for the later half of October and early November, I'm happy that Ethan and I are getting back on the bike more of late. 

We had a quiet and wonderful Thanksgiving at Sarah's parent's place. Caleb had the whole week off of school (what else is new?) and Sarah took some extra time off.  We had a nice stay-cation and some good family time to cap off the holiday.

My mother and step-father are arriving in mid-December and will be with us through Christmas.  So, we're looking forward to that.

And Sarah's choir, the fantastic Aurora Chorus, is getting ready for their December concerts.  They should be amazing, as usual. (Tickets are still available ;-))
Grandma Pat at Thanksgiving