Summarizing Summer and Falling Down Running

Below, there's a little bit about our summer, then fall starts creeping in there without much warning. Oddly the pace of things doesn't change much, but the activities change a bit. I think you'll be able to pick it out when you get there.


Caleb, Ethan and cousin Penny creek stomping,
This summer we had/did/went/played/(other appropriate verb'ed): Nerf gun fights, pillow fights, tickle fights, tag, hide and go seek games, playground playing, stream stomping, Frisbee playing, lots of baseball, bike rides (certainly), kite flying, sandbox digging, dam making, swimming pool floating, fountain splashing, osprey watching, birthday partying, candles blowing, present opening,dog walking, fetch playing, boating, horseback riding, tide pool watching, lighthouse climbing, rock scrambling, s'mores making (and eating), book reading, snuggling,...

<take a breath>

Exploring the fountain.  Face first. playing, archery shooting, video game playing, sword fighting, karate chopping, rock skipping and rock jumping, zoo going, train riding, steam tractor watching, air show ignoring, fireworks (both ooh'ing and aaah'ing), aquarium visiting, imaginary fishing, real fishing, camp fire singing, downhill dare-deviling, face painting (voluntary and incidental), magic show watching, whale watching, story listening, octopus spying, puddle jumping, puddle wading, sand castle making, dead animal finding, picture coloring, checkers playing, firetruck riding, fort making,

and repeat.....

More fountain splashing!

What we didn't have a lot of this summer?  

Doctors' appointments.  I think Ethan only had two and a half doctors' appointments between mid-June, when Caleb got out of school, and the start of September, when school started again. One doctor's appointment was with the ear, nose and throat specialist to check on Ethan's ears since his both of his tubes have now come out.  The second appointment was with Ethan's PCP to start bringing his immunizations back up to date now that he's not immune compromised. 

An evening outing to check
out an osprey nest.
Oh, the half appointment? That was when the boys and I rode into town and took the aerial tram up to the hospital to see Ethan's ENT, only to find that Dad had screwed up and the appointment was actually over in the west side suburbs. Oh, well, at least we got a nice ride in!

While we didn't have many doctor's appointments, Ethan did have speech and occupational therapy appointments twice a week.  He also had four weeks of 2x a week early intervention preschool. Caleb came with us for all of those (because he didn't have a choice) and graciously waited with me each of those times.

Clear Lake, WA on the boat
at Camp PrimeTime.
Another thing that we didn't do much of this summer was Taekwondo. While there were a lot of good points and parts of the martial arts classes, in the end, life, the universe and everything, including Taekwondo, sort of imploded at the same time. It was becoming apparent that Ethan was developmentally too young to participate constructively, and I felt that he was creating too much of a distraction for the other kids in the class. Caleb made some good progress and got his yellow belt, but at least for the moment, there was more he didn't enjoy than he did enjoy. 

At the Clackamas river.  Just after
this was taken, Ethan stumbled
into a yellow jacket nest and got
stung four times before I could
run and get him out.
Log + Stream = Dam

Not surprisingly here, I was enjoying the classes more than the boys.  but the classes are very time consuming, so it would have been difficult for me to continue without having the boys there.  In the end that didn't matter though, because in late June I started back to school for another degree.  From the night I had my first class, it was clear that there was no way that I was going to be able to balance the boys, Taekwondo and school.

I was enjoying the ride, unfortunately Ethan was not.
I must say that I am extremely grateful to Master Shuny Bee, his wife and partner Neelam, and the entire community at Bee Martial Arts. They have created a warm and supportive community and were fantastic to work with from start to finish.

At the start of September, we enrolled Ethan in Top Soccer, a program for special needs kids.  Ethan loves balls, kicking them, hitting them, catching them, throwing them, bowling them--doesn't matter to Ethan.  In fact, one of Ethan's favorite games is "BAAALLLLLL!!!!"  Shouts of "BAAALLLLL!!!" are followed by racing out to the carport, finding whatever ball is closest and verb-ing it.  We're pretty sure Ethan's going to have a great time at Top Soccer!

BAAAALLLLL!!!  used to be Ethan's absolute favorite game.  Now I think it's a close second.  Ethan's current favorite game has to be "YAAAAAAA!!!!" 

YAAAAAAA!!!! is also played in the carport, though it is occasionally played inside. In YAAAAAA! two players each grab a stick-like object, for example a plastic or aluminum baseball bat, plastic sword, or toy light saber.  Then, at the top of the inning, participants swordfight while yelling "YAAAAA!!!"  At the bottom of the inning, the closest ball is incorporated into the game and participants play versions of field hockey, baseball, football, golf, etc.   One piece of advice for grownups playing "YAAAAAAA!!!!", a protective cup is strongly suggested.


Developmentally, Ethan made A LOT of progress this summer.  He made clear progress in all areas.  In speech, for years I've been saying that Ethan has a daily vocabulary of about 15 spoken words.  Recently, to my great joy, I've had to revise that, and I'd now say that he has a functional vocabulary of about 40-50 words.

Just as this occurred to me, Ethan ran out of insurance coverage for his speech therapy for the remainder of the calendar year. Ethan gets 25 neurodevelopmental rehab visits each year. For someone with multiple disabilities, like Ethan, we would then need to split those visits among speech, occupational and physical therapy. We had already decided at the beginning of this year that even though he needed other therapies, we had to use all of his covered appointments on speech because his need there is so great.
Beach vacation!

When we started weekly speech therapy at the beginning of the year, our therapist said that she was confident that she could get more visits approved once we ran out. As we got close to the end of our covered visits, she submitted a request to Oregon Blue Cross/Blue Shield for more coverage. When she sent that in, the insurance coordinator who works for her said, "Oh, that BC company never approves additional visits." And sure enough, the request was denied.

Aurora the octopus at the Hatfield Marine Science Center.
Check out the OctoCam.

Short family bike ride at the coast.
After that, I took over and started putting together an appeal of that decision. I requested letters from every one of Ethan's relevant doctors and therapists. In the end, I submitted a thirty-page appeal with letters from Ethan's external speech therapist, early intervention speech therapist, neuropsychologist, bone marrow transplant lead, pediatrician, and geneticist. We clearly demonstrated that ongoing, intensive speech therapy is the defined standard of care for Hurler Syndrome, that Ethan is at a critical age for language development, that he is benefiting from these services, and that continuing these treatments is cheaper than the long-term costs the insurance company would incur if his speech develops more slowly. 
Mom time.

The insurance company denied that first level appeal in less than 48 hours.

Before submitting a second level appeal, I wanted to do some research to find new information or a new approach. In that process, I asked BC/BS for a written copy of their appeals process, who reviews the appeals, and their basis for decisions. I never got that information, but during a phone call with a customer service agent, I learned something important. This general customer service agent, who just happened to be the one who answered the phone and who had not been involved in any part of Ethan's case essentially said, "Look, your wife's company's insurance plan is self-funded. BC/BS basically administers the contract. But the employer pays all of the benefits. Since BC/BS isn't the payer on claims, we're not in a position to approve any additional benefits. Period."

Wow! I had been working on this for a month. I'd talked to numerous people in case management and in appeals at BC. It seems self evident that with a self-funded insurer, they would have to be the ones to authorize additional benefits, right? Well, I hadn't made the connection, and no one I talked to outside of BC told me that this might be an issue. The fact that none of the many BC employees I dealt with mentioned this to me leads me to believe that they see part of their job as protecting the employer from dealing with upset employees who are experiencing insurance issues.

Early on in our work on an appeal, Sarah had told her employer that we had hit this limit and that we were appealing to BC. Evidently, her employer had already decided to provide additional coverage for Ethan, but hadn't yet let us know. When we learned this new information, Sarah sent them a copy of our appeal and they called her that afternoon to say that they would cover it.

We always knew that Sarah worked for a great organization. Sarah loves her work, the organization has both challenged her and treated her well. But they have really done a great thing here and we're very grateful.

Ethan has also made solid progress in occupational therapy.  His therapists say that the carpal tunnel surgery has resulted in noticeably greater finger strength and dexterity in his thumb, index and middle finger and resulting gains in his drawing ability.  His ring finger and pinky are still slightly curved from GAG accumulation in the tendons and may always be weaker than the others because they're used less.   

In preschool, Ethan's early intervention teachers are reporting a lot of progress in Ethan's attention span, how well he plays with other kids, and generally how well he participates in class.
Ethan's early intervention classes are really driving a lot of his progress.  The teachers there are great, but the combination of the teachers with peers who can model behaviors is incredibly powerful.  It's so powerful, in fact that after seeing potty trained kids at school Ethan has started potty training himself at home.  Sarah and I were incredibly surprised to see that.  With all that his body has been through, and considering where he is overall, we didn't expect to be able to work with him on potty training for at least another year.  In truth, though, Hurler kids have problems with loose stools and general control and we'll be working with potty training and accidents for years to come.  

After years of rehab therapy and 6 months of early intervention preschool, I can't tell you how fantastic it's been to watch his progress. It's like part of him has woken up.  (I hope that this means that most of the storage material that accumulated in his brain pre-transplant has mostly cleared.) Even while we're seeing all of this great progress, there is one thing that has made it all too clear just how far behind he is and how much more work he has to do. 

Comparing Ethan's development with other kid's has always been kind of a difficult and overly vague thing to try to do. I almost never sit down with developmental checklists and go down the list to see which skills Ethan can do and which he can't do.   But then one day recently it occurred to me that Ethan is due to start kindergarten next fall in September 2013.  That's when it kind of fell on me like a ton of bricks.

I mean, I know kindergartners  I know what a kindergartner does, what skills and abilities they have;  I have a pretty clear picture of them.  Ethan doesn't look anything like that picture.   All of a sudden, I had a clear mile marker in my mind and I saw how far we have to go to reach it.

Really, there is no way to reach that marker.  There is no way that Ethan's going to begin to approach a normal set of kindergarten-ready skills. 


Yaquina Head Lighthouse.

Part of me says that the farther away from that he is from that mile marker when he starts kindergarten the harder it will be for him to ever approach normal.  I have this vision in my head that kids gain skills at a walking pace before they start school, but once they start school their pace of learning becomes a steady jog for the next twelve years.  I see the progress that Ethan's making now and I feel like I have to get and give him all of the support we can so that he can start jogging now.  He's got so much farther to go.  There's no way I'm going to be able to get him on the track with those kids before the race begins, but I just want to try to get him in the stadium.

Just doesn't get much better than this.

Top Soccer
Given the progress he's been making in early intervention preschool, and the fact that this is his transition year before he starts kindergarten, I started talking with his team to see if it was possible to get additional services for him.  We just met this afternoon, and there is a once a week skills group that focuses on speech and motor skills that might fit Ethan's needs.  The challenging part is the group meets on the same day as Ethan's preschool.  That means that he would go from 930-12 and then from 1-230.  It would be a very long day for him, especially if he keeps waking up at 5 in the morning.  But if he can stay awake for it and fits in with the level and composition of the group then it would be great for him to take advantage of the opportunity.

M.D. Stuff 

Medically, Ethan is doing very well overall.  To do a quick health check for Ethan you usually only have to ask which and how many medications he's taking.  Well, at the moment, Ethan is only taking ONE, one, one, one, ONE! medication, and that one is a prescription multivitamin with fluoride ('cause Oregon doesn't fluoridate their water, unlike the rest of the civilized world).  We're still occasionally using a topical steroid when Ethan's eczema flares, but even that's been largely under control for the last couple of months. He's even (generally) off of the melatonin.  Usually, unless his schedule gets disrupted we're able to get him to sleep pretty easily in the evening if he hasn't had a nap.  (Unfortunately, since school's started, he's been consistently waking up at 5a, so has been needing mid-day naps lest be become unbearably grumpy in the late afternoon.  That mid-day nap is in tern making it harder for him to get to sleep in the evening.  Ah well, it's all a work in progress!)
New bike!!  (This is a momentous, if frequent,
occasion in our house!)

Ethan's health has been strong and stable, but there have been some significant developments. Two days ago, Ethan had sedated hearing and vision checks. Ethan is not fully cooperative enough to get reliable results from standard pediatric hearing checks  The hearing test is called auditory brainstem response.  Under sedation in the OR, an audiologist channels various sound frequencies into each ear and can measure the neurological response which tells how well that frequency is being interpreted and transmitted by the ear. With the vision test, an ophthalmologist shines light into the eye and is able to assess a patient's vision by how that light is reflected or refracted back.

We got good news and bad news from the tests. The good news is that Ethan's hearing has improved post-transplant. The pediatric guidelines say this happens in about 30-40% of Hurler kids.  His hearing improved to the point where we certainly need to reprogram his hearing aids and we may be able to stop using them altogether.   Ethan's ear tubes came out last spring and we have been monitoring him to see if and when we need to place a new set.  The way its been explained to me is that the Eustachian tube in Hurler kids tends to have a more shallow slope so that it tends not to drain as well.  As a result,  Hurler kids get a lot of ear infections before diagnosis and after diagnosis go through multiple sets to the point where the scarring on their ear drums prevents additional replacements. At the time of the test, Ethan had some fluid build up behind both ear drums, this likely contributed to some conductive hearing loss that would go away if his ears were draining properly with new tubes.  I've set up an appointment with his ENT and--assuming I go to the right office this time--we'll talk and see if he thinks new tubes and allowing that draining would get us the little bit of additional gain we need to put the hearing aids away.

As for Ethan's vision, the test showed that he is quite farsighted, and will need glasses.  I've got the prescription and am working to find a retailer who carries the particular type of frames that have been recommended.

Believe it or not the other thing that we're working on for Ethan is a push chair/stroller/wheelchair to replace the old stroller that he's outgrowing.  This is a pretty complicated issue, part of it is medical and part of it is developmental.    When we're out and about and walking Ethan will express fatigue after just a few minutes and will want to be carried.  Ethan has an especially hard time navigating uneven terrain or soft ground  Medically, this is completely understandable, this kid's got a curved spine, improperly rotated hips and bent ankles, he's got muscle and fatigue issues that we can't even imagine.  At the same time, this is the same kid who can jog for 45 minutes at soccer and smile the whole time. So clearly part of this has to do with Ethan's willingness to participate and his ability to ignore the pain and fatigue when he's doing something he enjoys.

That brings us to the other side of this, which is developmental.  Developmentally, here's a kid who has been given very few choices in life and is still often folded, prodded, bent, held and subjected to innumerable medical tests, physical evaluations, tooth brushing, diaper changing, etc., etc.. add to that the fact that he's largely non-verbal and has a hard time expressing his needs or his preferred alternatives.  What you've got is a very willful kid who won't go where he don't want to.  Unless, that is, we put him in a stroller.  Then he'll usually settle quickly and will be content just to go along and watch the scenery even without being buckled in.

Neither Sarah or I are wild about this decision.  It's hard to watch Ethan run around and reconcile that with his real and valid medical needs.  Equally, using it to coerce his cooperation seems like a rotten choice, too.  But both of these issues are a real part of working with Ethan and in the end, he's just getting too big to carry around all of the time.

The other downside of a push chair for Ethan is that when we want to ride our bikes and need to take it with us, we'll have to put it on a flat bed bike trailer and tow it along.  That means, conceivably, that I could be riding Ethan in our nine foot long cargo bike, towing Caleb on his trail a bike, which is attached to my seatpost (that's about another 4 feet), with a five foot flat bed trailer behind him. What's that an 18' bicycle?  (I"m so glad for the electric assist on that bike!)  But rigs that size, while rare, are not unheard of in Portland, and I'm not willing to give up the bike for this.

That makes me think that I should bring you up to date on our grand experiment, biking with a medically fragile child and his brother in Portland and the surrounding 'burbs over the last year.

We started our experiment in August of last year.  In the last year, the boys and I racked up about 2,000 miles on the cargo bike and Sarah did a whopping 4,000 miles on her bike, commuting to and from work and peddling around with us.  To put that all in context, we probably put about the same total number of miles on our minivan last year.  Give or take. 

There are some differences between last year and this year and it will be interesting to see how this all plays out.  On the one hand, Ethan is less fragile than he was last winter and about the middle of last winter, I finally figured out how to use hot water bottles in the kid area to keep him nice and toasty.  On the other hand, Caleb has outgrown the fully enclosed kid area which means he'll have to be on the trail-a-bike.  We've already purchased his waterproof bike gear (we stock in rain gear like a bear puts away food for hibernating).  But it's unlikely that he'll have the same tolerance for all of this that Sarah and I do and we don't want to beat him into the ground with this.  We're going to have to moderate what conditions we ride in when he's coming with us.  On the third hand, Ethan doesn't need to check in at the hospital on a regular basis  which means that our trips won't be as long and low temperatures won't be quite as much of a concern when he's in the kid compartment, bundled up. On the fourth hand, we did a lot of biking this summer and Sarah and I are both going into the fall feeling pretty strong and confident about our ability to manage through all of this. 

Much will depend on how cold it gets and how much Caleb wants to ride through the weather. In the end, I expect our total mileage (bike and van) to decrease, but think the mode split will stay about the same. We shall see.

Second Grade Superstar

In other Caleb news, the big man started second grade a couple of weeks ago.  We hadn't been able to go to the pre-school year open house because we were down at the Oregon coast for a few days.  On the first day of school, we were pleasantly surprised to find that Ethan's teacher is Mrs. Crowson who lives across the street and one house over from us.  Mrs. Crowson is a wonderful lady and we're glad that she asked to have Caleb in her class this year.   Caleb made a whole bunch of progress at the end of last year, we're looking forward to helping and watching it continue!

Now that Caleb is finished with Taekwondo, he wants to start baseball.  Unfortunately, we don't have an indoor baseball league here, so he's going to have to wait until spring.  In the meantime, he's having fun playing "Big Wheel Bash Tag" with the neighbor kids.  BWBT is played with a Big Wheel or other plastic trike.  The last kid bashed into is "it."  Hmmm, bashing seems to be a common thread here....

The adventure continues.

Thanks for checking in.


Wow guys! So pleased to hear about Ethan's progress and what an amazing summer you have all had. Lots of love xxx
Anonymous said…
I love reading your updates. They are always brilliantly written and, in this one, there is so much good news! You all continue to amaze me...

Barbara T.