brothers

brothers

Saturday, March 18, 2017

Breakthrough!

Sarah and Ethan at a fire department open house.
Ethan is doing so awesome that it’s time to update everyone! 

Ethan’s been stuck in a rut much of the year.  Then he started taking kung fu classes and that’s shaken things up and given him a lot of confidence to get past the sticking points.

School

Through the first five months of school, we weren’t seeing the confidence and the growth that Ethan showed us he was capable of at the end of last year.  Overall, he wasn’t doing badly, but there were a couple of areas of the school routine that he was having a hard time with all year and it was throwing off his rhythm for the rest.

Cookie time!
Morning drop-offs were particularly hard for him.  At the end of last year, Ethan was confidently walking down the hallway, saying hello and good morning to people as he walked by. This year, he started the school year in his push chair because he was still recovering from surgery.  He got into this passive and negative, “I don’t want to be here” mindset, and that set the tone for the rest of the day.  He would get through the days okay, but he wasn’t particularly  happy about it.


Poekoelan

Ethan likes to daydream about things he wants and things he wants to do.  He wants a pet horse.  (That’s not gonna happen.) He wants a new house. (That’s not gonna happen.) He wants a baby brother or sister. (That’s REALLY not gonna happen.) He wants to fight bad guys and save the day. (I hope that’s not gonna happen.)  He wants to train in kung fu.  Well, wait-a-minute-now, that’s something we can do!

Like any good parents, we bribed him.  He could take kung fu classes if he worked hard in school, and particularly in the areas he was struggling.

The improvement was immediate and pronounced.

We talked with Ethan about kung fu and school over the weekend. The following Monday, he aced drop-off.  No fussing.  Got out of his chair unpacked and gave me a hug, goodbye. Then he aced the rest of the school day: stayed on task with his classmates the whole day.  Then he did it again. And again.

I figured it would take a couple of weeks for us to see sustained improvement.  He was doing so well, that by the middle of the first week, it was clear we would need to start trying to find a good martial arts school for him.

Unleashing my own Google-fu, I found a school on the other side of town where one of the owner/instructors has a master’s degree in special education—not something you see very often.  I called and spoke with her and we agreed to try Ethan in their Saturday morning 4 - 6 year old class.  Developmentally, that seemed an appropriate fit for him, and size wise, even, he’s heavier than most of the kids, but he’s not much taller than they are.  Overall, he fits in well.

The school is the Tulen Center, they teach an Indonesian kung fu called Poekoelan (check the Pukulan information here for a description). 
Training hard!
 
We didn’t tell the instructors, Sylvia and Jeff, much about Ethan before that first class outside of the fact that he’s physically and developmentally disabled, but is a very active kid.We really wanted them to discover Ethan and explore his capabilities for themselves, and I’m so glad we did it that way. 

Throughout that first class, Sarah and I sat there with baited breath hoping Ethan would succeed. He did so much better than we expected.  Physically, he has a hard time keeping up with the class, particularly in the running exercises.  What do you expect? He just had hip reconstruction surgery last summer and he’s still got a lot of orthopedic stuff going on.   Ethan worked hard though, he pushed himself and let himself be pushed.

The kicker of the class (no pun intended), was that Ethan excelled in areas that we didn’t expect it.  First, Ethan paid attention and stayed engaged for the whole hour.   Even more, it was awesome to see how he stayed engaged.  Not only did he listen to the instructors, but he watched carefully and modeled their behavior.

When it came time to practice the martial arts forms and techniques, Ethan was right there next to an instructor, paying attention and doing a fantastic job with copying and body planning how to execute the moves. His technique was pretty damn good.

We were all thrilled by that first class. Ethan had a great time and had fun being with some other kids and was justifiably proud of himself.  Jeff and Sylvia did a great job setting high expectations and being supportive of his successes.
School arrival

Last week Ethan continued to impress, and I was struck by the more experienced students, even young kids themselves, instructing the younger kids.  I wasn’t necessarily surprised that they were doing it, as I was with the care and respect and acceptance that the student instructors demonstrated.

Today was his third class.  He struggled today, maybe because he was a little tired.  He was pretty down when he got home.  Turns out, he tried to tell his teacher an idea during class and his teacher didn’t want to listen to it right then.  That stung some and he sat out the last fifteen minutes of class with Sarah.  Even kung fu classes for little kids have rules and structure, and that’s going to be a challenge for Ethan to learn and adhere to. But we’ll keep looking for ways to help him stretch.

Ethan has continued to be a rock star in school, and his confidence there is increasing day by day. We use the chair when we walk to school, because it would be a long, difficult walk for him I’ve finally been able to convince him to get out of the chair at the end of the hallway and walk down to the classroom with me.  Walking to class, instead of being passively pushed to class, is a big milestone, and something that we knew he could do. 

His morning arrival routine has gotten so much better.  When we get to the classroom we now get a hug and a kiss and a confident “Bye!” instead of the crying and clinging we saw just last month.

 Ethan’s memory has always been a little dicey. It’s thrilling to see him learn and recall the pieces each week.
Heavy metal chef!
At home, he’s showing off his kung fu and that we're surprised that he remembers and can execute the forms he practiced the week before.

We have always believed that, not only could Ethan thrive in school, but that, at his core, he wants to be in school and be around the other kids and will thrive on those interactions.  Similarly, it’s always been impossible ignore that Ethan is a physical kid.  He loves to run and play.  Poekoelan is such a great way to explore that that, both in its physicality and, because that physical growth is nurtured with emotional growth and a supportive community.

In his heart, Ethan has always been a very active, very happy, very social, and very positive person.  We lost that over the last few years, but a lot of what we’ve been doing with Ethan has been focused putting the trauma aside and making a safe space for Ethan to rediscover himself.  

It’s been wonderful to watch, and we’re just a little proud of him.

Okay, that was the big news.  Here’s a quick rundown of other things going on with Ethan.

Hearing Aids

After a new hearing test and talking with a new audiologist, Sarah and I reintroduced Ethan’s hearing
Cool green hearing aid molds
aids a couple of months ago.

We took them out a few years ago, after a post-transplant hearing test showed improvement. At that time, the audiologist suggested that the aids might block as much sound as they amplified. 

We had not been hearing any improvement in Ethan’s pronunciation, and he has still been quite difficult to understand, especially for people who don’t know him.  Ethan is not wild about working through speech therapy. Reintroducing the hearing aids is an attempt to help him hear sounds more accurately in the hopes that he’ll eventually start to pronounce them correctly. 

It’s a long-term question, and I think it will be a couple of years before we can say whether it’s made a real impact.  After a couple of months, I want to say that I think I’m hearing just a little improvement, but time will tell.

Hip Surgery Recovery

Ethan’s hip surgery recovery is going quite well. He still limps, particularly in the morning, and his endurance and strength are still limited.  But he’s making good, steady progress. We still use his chair for walks over five minutes, and that probably won’t change in the near future.

We saw his orthopedic surgeon, Klane White, in January and he was happy with Ethan’s recovery.  Dr. White said he’d like to go in and straighten Ethan’s ankles a bit.  Sarah and I are asking if we would see enough improvement from that to make it worth it for Ethan to go through another surgery.   We’re going to take some more x-rays this summer and then we’ll see.  Regardless, he’ll need surgery sometime this fall to remove some hardware that’s done its work.

Other Appointments

We’re asking these quality of life issues a lot now.  Ethan’s through the major medical issues for the time being.  What we know of the disease suggest that Ethan may face additional major surgeries as a teenager. And he may face some minor procedures over the next couple of years. But we’re really feeling like we’re through the worst of it for now. 

Sarah and I have started trying to stretch out the medical appointments when we can.  If a visit to a specialist doesn’t show any problems, we’re trying to double the length of time before the next appointment.  When Ethan’s audiologist wanted to see him in six months, we asked for a year. When his cardiologist and endocrinologist wanted to see him next year, we suggested two year.  In each case, everything is stable and we’ll do some monitoring with his pediatrician.  But we’ll all, especially Ethan, appreciate fewer appointments and less poking and prodding in our future.


Lowering the Wall

With Ethan's healing and progress, it’s time for Sarah and me to lower the walls we built around him.  For the last few years, Ethan’s anxiety and trauma related behaviors meant that adults working with Ethan had to use a lot of special, non-intuitive and non-traditional strategies.

Adults who didn’t know better could easily trigger a behavioral escalation, or just stress him so that he retreated into his shell.  Similarly, Sarah and I were very cautious about who we would let take him out in public and what they could do with him. Ethan often had behavioral escalations in public that made it difficult to work with him or which could result in Ethan putting himself into a dangerous situation, like running into the street.

Now, Sarah and I often remind ourselves to take a deep breath and take a few steps back.  Many of the limits and cautions that became reflexive over the past couple of years are now overkill.  Not only do we hold Ethan back if we stick to those same old limits, but Sarah and I come across as the worst kind of overprotective parents. 


Sharing a Room

Also this fall, at both boys' request, they've started sharing a room. We reassembled both beds into their original bunk and set them up in Caleb's old room.

It's lovely that they want to have that experience.  I think Caleb has wanted to share a room for a long time.  But, until recently, Ethan needed his own space.  Both boys have done well together.  But it's also true that they don't spend a lot of time in the room together when they're both awake.  Ethan almost always goes to sleep before Caleb, and he takes meds to help him sleep.  They miss that laying in bed with the lights off, being silly and giggling time.

We need to think of ways to help encourage that.   Hmmm....





Thursday, August 11, 2016

Let Ethan be Ethan

Ethan got his brace off today.  Boy was he ready for it!

We're still on our way home from the appointment. We stopped at a hotel in central Washington for the night to break up the drive and so Ethan could get some long overdue pool time.
Ethan's really happy to be out of the brace, but the recovery is going to be a long process.  His leg muscles are very weak.  He hasn't walked in six weeks.  And I would guess that his muscles have a different relationship to his hips than they've ever had before.

(Don't quote me on that part.  It's not something that we talked about with his doctor.  Ethan was so ready to be done today, this was one of the quickest doctor's appointments we have ever had.  We drove four hours up to Seattle for what turned out to be a 15 minute appointment.)

Anyway, Ethan can't walk unassisted, and it may be a week or two before he works up to that.  But, since the brace isn't holding him in place, he can sit up, which is huge.  And it's much, much easier to pick him up without the brace hardware getting in the way.

Ethan's doctor has said that we could take or leave physical therapy.  Right now, Ethan's legs are really weak,
As I write this, Ethan's doing
a little dancing with Sarah.
and may well limp for about a year.  But, looking at the bigger picture, Ethan's done more rehab therapy in the last 5 years than any three other kids combined.  This doesn't feel like an issue we want to push hard on. Ethan is a big muscle kid who is highly motivated to be active.  I think we'll add some PT time to his school plan and leave it at that.  

A couple of weeks ago, Ethan turned eight years old.   Since he was diagnosed at 51 weeks, Ethan's dealt with:
  • two bone marrow transplants
  • numerous small surgeries (hernia repairs, carpal tunnel repair, multiple sets of ear tubes, central line placements and a couple lung procedures)
  • developmental & verbal delay
  • Extensive rehab
  • anxiety and trauma related stress
  • major spine surgery
  • knee surgery and 
  • hip reconstruction
This fall, we'll be slowly working through Ethan's annual appointments.  At the moment, Ethan's in pretty good shape and we don't expect any particularly bad news.  We are all hoping that Ethan gets four or five good years before we have to deal with the next thing. (Whatever that will be.  If I had to guess, I'd say cornea transplants.)  Honestly, if we do find out there's something we need to address right away, I'm not sure if we could stand to put Ethan through it. 

We expect that we'll still have to come up to Seattle for surgery follow up and then regular ortho check-ups.  But hopefully, this will be the last big thing that we need to do here.   Sarah and I are very happy with the surgical and nursing team at Seattle Children's.  Dr. White's understanding of the complexity of the disease and his technical skill validated our decision to haul our butts up and back to Seattle a couple of times a year.  And the post-surgery doctors and nursing staff, really stepped up this time and really went above and beyond to tailor Ethan's care to his developmental level and trauma background. 

For other MPS families, we'll add that we're much less happy with the hospital management at SCH and how well the hospital as a whole understands the needs of MPS patients. As you may recall, SCH almost cancelled Ethan's surgery because they didn't have enough intensive care resources to care for him post surgery.  After we were discharged, Sarah and I wrote a long letter to the hospital management and CEO detailing how an arbitrary surgery delay would impact patients like Ethan and families like ours.   We recently heard back from one of their VPs and it sounds like they talked a lot about our concerns but then decided they were right all along and just wrote us off.   We'll give them one more go to see if we can get through to them before we throw in the towel.  But I think we're pretty glad that we don't need to decide whether or not to pursue other big procedures up here or go elsewhere.

But, that's not a big thing for us right now.  The major point for us is that we're done for awhile.  It's time to let Ethan be Ethan and time for smiling and laughter and more growth.