brothers

brothers

Thursday, June 13, 2013

Add another surgery to the list

While we're in Seattle, Ethan had his six month check-in with his orthopedist, Dr. White. 

Dr. White agreed that it would make sense to look out the outer edge of the timing window for Ethan's hip reconstruction.  This will give Ethan more time to develop so that he can better understand what's happening and can participate more in his recovery. 

But, that may not matter because we got bad news about Ethan's spinal kyphosis.  It's degraded from a 50 degree curve to a 60 degree curve.   That basically takes it out of the "we'll keep an eye on it" category, and puts it in the "we'll probably have to operate within the next 2 years" category.   That means posterior and anterior spinal fusion. 

Ethan will have a spine MRI when we're in Minnesota and that will tell us if the curve is impeding the flow of spinal fluid in his lower spine. We won't necessarily wait for that to happen, but once it does, corrective surgery becomes more urgent. 

In the meantime, there's general agreement that Ethan's knock-kneedism is getting worse. But the general thinking is that it can wait until he needs surgery for something else. 

Obviously, there's more to say here.  But I'll hold off until we have a chance to review and consider the doctor's written report.

Sunday, June 9, 2013

Summer Vacation (and the Next Chapter)

Ethan avec Play-Doh, ready
for the last day of preschool 
Last Thursday, Ethan attended his last early intervention group session. An hour ago, I turned in my last Intro to Computer Programming assignment.  Monday morning, Ethan's got one last physical therapy session. On Tuesday, Caleb finishes school and I'll take my final exam.

Everyone in this house has summer-itis.  We are all so very ready to be done.

I want to tell you what our summer will be like, but I'm not sure which summer to tell you about.
Do I tell you about the summer where we're pulling Caleb out of school a day early so that we can take a four day family vacation in Seattle?

Or, do I tell you about the summer where we're wrapping a Seattle vacation around Ethan's orthopedic appointment?

Do I tell you about the summer where Caleb, Ethan and I are taking a 36 hour (2 night) adventure on Amtrak's Empire Builder (in coach) to Minneapolis?

Or do I tell you about the summer where Caleb, Ethan and I are going to Minneapolis for 4-5 days of base line evaluations for Ethan's participation in the enzyme replacement study?
Enjoying one of the rare sunny and warm days
that we had this spring.  

What I really want to tell you about is the glorious carefree July and August we're going to have, free from the 3-5 rehab and early intervention appointments that Ethan has had almost weekly for the last two years.

Or do I tell you about our basically open summer schedule punctuated with a surgery to place Ethan's new central line and, at some point, a return to weekly 6 - 8 hour infusions? And where I've got a steady stream of school work to do, even though I'm not taking classes?

See, I want to tell you about our glorious carefree, dream summer.

But I think I need to tell you about our mostly open summer, where we've got some things we need to do, but we're going to try and have a boatload of fun, too.

I think that's the thing.  We've got things going on this summer, but we are making determined efforts to  swap the focus.  In the past couple of years, we've fit the family fun into the nooks and crannies around Ethan's schedule.  This summer, I want to fit the appointments into the nooks and crannies around our family time.

Transition

Ethan amazed us by demonstrating
that he had the dexterity for thumb wrestling.
And then double thumb wrestling!!
This summer really is a transition for Ethan and for us.  For the past two years, Ethan's world has revolved around home,  one-on-one therapy sessions, and small group early intervention rehab (and doctors' appointments).   While there's been some consistency to our schedule, there hasn't been a regular, predictable routine.  

But now, he's finished with the early intervention program, and. almost at the exact same time,  we have used up the extra rehab therapy that we appealed for last year. The fact that Ethan's schedule (and thus our schedule) is open this summer is as much a result of the fact that we've used up all the resources we had, as it is anything else.

But, do you know what?

That's okay, because early intervention and individual rehab helped Ethan make a lot of fantastic progress.  In fact, Ethan's made more progress in all areas in the last 6 - 9 months than he did in the preceding two years.

After more than a year of seeing little to no progress, early intervention and the individual rehab services were there to help him when he became ready to learn.  For years, the doctors had been telling us that it's important to provide intensive support when children are most ready to take advantage of it.  I had started to doubt the wisdom of that.  In the end
Caleb's expression.... Smug?
though, it did prove true for Ethan, even if it was late in coming.

Kindergarten

Friday afternoon, Sarah and I met with his early intervention team and the elementary special education team to talk about Ethan's transition to kindergarten.    

Even with all of the progress he's made, Ethan's developmentally and functionally delayed.    In speech, I'd say his verbal functioning is that of 2 year old (which is depressing, but still a huge improvement).  In his daily skills, like writing, drawing, dressing, and in his cognitive understanding,  he's maybe somewhere between 3 and 4. 

Given where he's at and the range of his needs, Sarah and I had agreed among ourselves prior to the meeting that the best kindergarten placement placement for him would be in a self-contained special education classroom.   We had gone to visit a special ed classroom and the mainstream classroom the month before.  Seeing both, it didn't take more than a minute or two to realize that Ethan would have a hard time getting his needs met, keeping up with the pace of learning and not getting distracted or being a distraction in a mainstream classroom. 

In a special education classroom, Ethan will have a student to instructor ratio of 1:3 or 1:4.  In addition, he'll receive a heavy schedule of one-to-one pull out services for direct work on speech and occupational therapy.  We recognize that Ethan is a very social kid.  After spending so much time in relative isolation, he loves being with other kids and learns so much from them. We were hesitant to put him in a smaller class setting. We made sure to include opportunities for him to spend time in larger class settings, among kids who talk and socialize normally and who aren't battling their own disabilities. So, he's going to join the mainstream class kindergarten classes for circle time and for recess, at a minimum. 

Unfortunately, the self-contained special education class room near us isn't at the same school that Caleb attends.  It's at the other elementary school, which is actually closer to us.  Caleb is disappointed that Ethan won't be at his school next year. But, if we're very lucky, it may be that Ethan could join Caleb at his school the year after.

At Clackamas River Park
I really want to use the next year to give Ethan more time and support to help him catch up. I'm hoping that a special education classroom and a heavy schedule of direct one-on-one pull out support will help him continue the gains he's been making.  By the end of the year, I hope that the pace of his learning has continued to improve and that he's got a solid foundation that will enable him to repeat kindergarten in a mainstream classroom the following year.

I know of many other Hurler's kids who are in mainstream school classrooms with moderate support.  I have always felt that we lost (at least) a year with Ethan due to the failed first transplant.  I'm hoping that more time and more direct
A couple of days after our trip to
Clackamas River Park it became clear
that Ethan had been set upon by chiggers.

Poor guy can't get a break.
support over the next year can help Ethan overcome that additional damage.

In the end though, it's all up to Ethan.  Over the next few years, even if Ethan repeats kindergarten, we need to be able to slowly lower the number of school provided rehab hours he receives so he can focus on academic learning.

I don't know how it will all end up.  But I know that we're giving him the best shot we can.