|Barefoot racin' with mom|
A relatively brief note to give you an update on Ethan over the last couple of weeks as we head into surgery on Tuesday. (No, not really brief. Who am I kidding?)
In many respects, Ethan’s in as good or better shape now than we've ever seen him. He’s active, and engaged and happy and we’re hearing novel word use and longer average sentences.
The medical appointments during our Minneapolis trip were at times stressful. Overall, however, the trip seems to have done a good job in breaking up our lazy summer routines and allowing us to set some new patterns for the fall.
Playground time @ school
|At the Bilquest |
Even though Ethan is not attending school right now, his placement for this year is the self-contained special education classroom at Bilquest Elementary, just a couple blocks from our house. Ethan and I have been going over to the playground there in the mornings so that we’re on the playground with the other special ed kids and the gen ed kindergartners for their 15 minute morning recess.
Ethan hasn't shown any reticence towards getting out of the house and going over to the playground with me. He’s quiet when we’re at the school, but there are no evident signs of anxiety while I check in at the office prior to going over to the playground. I should point out, however, that we've been going over with his large stroller, both because it’s a bit of a long walk for him and because Ethan considers the stroller a safe place. So, at the very least, I have his passive acquiescence.
When we get to the playground, Ethan has been happy to play on the playground before the other kids come out. He’s okay playing when the other kids come out, but when all the kids are there, it’s 60-80 kids and I think it can get a little overwhelming. There have been a couple of occasions where Ethan’s headed back and climbed into his chair before recess is over. In which case, I stand next to him and we hang out and watch the kids play until recess is done.
Usually, once the other kids come out to recess, I try to fade away so that I can keep an eye on him, but am not right at hand as a playmate or if he needs assistance. Ethan doesn't interact with the other kids at all. He’s aware of them and sometimes seeing a kid playing on a particular piece of equipment will remind him that he wants to play on that, too. But he doesn't interact with them. I would suggest that’s a combination of factors: developmentally, he’s not really at a point where he often engages in interactive play, he’s out of practice with interactive play, and there are just a lot of kids on the playground.
The length of time for recess is pretty short. But usually Ethan’s done, or close to being done by the time recess is over.
Overall, he’s doing pretty well with it. Better than Sarah and I expected, I think. If he weren't going to be out for this surgery, I might start thinking of next steps, maybe inviting the other adults on the playground to look for opportunities to engage him, or taking him over earlier to join the spec. ed. kids at P.E., which they do immediately before recess.
Since school started, I think we've been out there about six times in the last two weeks. We don’t go on days when he’s got infusions and there was one day when he’d been up a lot overnight, where I let him sleep in and we missed it.
Enzyme Replacement Therapy (ERT) Changes
|Chillin' in his room during home ERT|
In other news. at the insistence of our insurance company, Ethan’s started doing his enzyme replacement therapy at home. This is not a huge deal for us. In fact, we probably would have pursued it last year, if our insurance policy had covered it at that time. We've had two home infusions so far. I don’t think the nurses are as good as at Legacy/Randall. They’re a bit sloppy, but nothing that we can’t catch and nothing that endangers Ethan. Doing it at home means that he looses that weekly trip out of the house and chance to engage with different people, and it means that I've got to be the one to restrain him while he’s being accessed. Both of those things are regrettable, but not so much so that it’s worth the couple thousand dollars per week difference in costs.
Ethan’s sleep continues to be an area of concern. We were running into a cycle where Ethan would go to sleep around 8:30p, then wake up overnight for 2-3 hours, then he’d be grumpy or have to nap in the morning. In order to make sure that we can get to the school playground consistently, we've been keeping him up till 9 or 9:30 so that he’s got a better chance of sleeping through the night. That seems to be working, there have only been a couple of times in the last couple of weeks where he’s been up for a significant period overnight, and that only kept us from going to play just the once. On average, I’d say he’s getting 10 hours. He’s probably running a slight sleep deficit and he’s been napping about one day a week, probably to help catch up.
New Occupational Therapist
Also new for Ethan, he’s had a couple of appointments with a new occupational therapist that that
Ethan's behaviorist recommended. Unlike his previous OTs, this one's has been working with him in a lot of nets and swings and big, upside down movements. She tells me that the big movement helps Ethan with his self-planning, problem solving and self-confidence. Ethan’s loving it. It’s just the kind of play that he most enjoys, upside down and topsy-turvey. They had these kinds of things at his last OT place, but that therapist wasn't doing any of this with him, that was all fine motor skills. In fact, I didn't even know that this kind of big movement stuff was considered part of occupational therapy. I thought this stuff was all physical therapy, gross motor skills stuff. Shucks. Ethan didn't like all that fine motor skill stuff. He never wanted to go to occupational therapy and resisted when he got there. With this new therapist, he’s only seen her twice, but he remembers that her place is a lot of fun and it’s not a struggle to get him to go back.
|OT upside down & inside out|
Sarah, Ethan, Caleb and I were in Seattle last Friday for Ethan’s CT scans and pre-op appointments. The surgeon reviewed Ethan’s images and examined him and said he doesn't have any significant concerns either about the knee plates and pins or the spine surgery. He says, given Ethan’s current flexibility, he thinks he can get almost full correction on his spine.
I don’t think that Sarah or I have any significant concerns about Ethan’s physical ability to handle the surgery. It’s going to be a painful and difficult recovery, especially the next couple of weeks. But physically, we think he’ll be just fine.
Our biggest concern, and we’ve explained this to the team in Seattle, is Ethan’s emotional reaction to the surgery. Our wonderful behavior specialist, Meg, and her daughter accompanied us to Seattle a few months ago and we took pictures of Ethan in various places in the hospital. Meg's daughter, Kate, put the pictures together with a story and had it bound into a book. This 'social story' talks about many of the things that Ethan will experience when we go for surgery. Sarah reads it to him almost every night to help prepare him. Honestly, he doesn't know about the surgery and wouldn't understand if we tried to really explain what's going to happen. But hopefully, the social story will help him feel less scared as we get ready.
More (very graphical) information about anterior-posterior spinal fusion can be found here.
More (very graphical) information about anterior-posterior spinal fusion can be found here.
After the surgery, Ethan will be in a back brace for three months. Ethan will be able to get around after his knees heal. The brace is intended to hold his back stable so it can heal.
We talked with the surgeon about our concerns that Ethan may not tolerate the brace. He said that he’s pretty happy with the quality of Ethan’s spine and he’s reasonably confident that if Ethan struggles with the brace his work will hold up for a while.
We agreed that when they fit Ethan for the brace, we will have them put the straps in the back so that it’s harder for Ethan to undo the straps himself. And said that we’d take it a day at a time and send him video if Ethan starts to fight us as the brace is being put on. If we need to, we will hold out the possibility of putting him in a cast. But that's a last resort.
Overall, we think he’s doing really well. He seems easier to transition than he ever has. He’s more flexible and agreeable in activities inside and outside the house. There are exceptions and times that he escalates. But those are now typically crying and upset and some grabbing and, rarely, scratching. Assuming that he’s caught up on his sleep and he’s on his medications, we aren't experiencing the full-tilt striped down melt-downs, hitting, throwing, etc..
Even though he's improved in that area, Sarah and I think that he's more reactive to certain kinds of stimuli. He's more apt to be withdrawn during medical appointments. And he's quicker to shut down or actively resist when there's a test, intellectual activity, or exam that requires his participation. Those are troublesome issues, especially as they are ones that we'll eventually directly confront in trying to reintegrate him to school. But, at least we understand those are triggers. We can limit his exposure to them and try to put together some work arounds and supports for him.
But focusing on the positive change we've seen. Much of the change is Ethan. He’s developing, getting a little more mature, the meds are helping. Part of it is us. We’ve changed our expectations of him and how we work with him. He can still be a challenge, but over the last month and a half, he’s been easier to work with now than he has been in a number of years. I’m glad we pushed the surgery back from July. He wasn't ready then, and he desperately needed that extra time to continue healing and for us to refine his medication dosages.
Sarah and I still hate that we’re about to put him through this. He’s doing so well that we want to give him more time to see where he can go. But that doesn't seem a responsible way to go. We agree that he needs this surgery and that it’s time.
Surgery Walk Through
On Tuesday, they'll sedate Ethan and take him back around 8:30 am. They'll spend about an hour prepping him and the areas they're going to work on. Then they'll insert the pins and plates to both knees. The plates will help correct his knock-kneedism. As he grows, his bones will push off the plates and straighten. In a few years, they'll take the plates out.
Then they'll roll him over onto his side. And go in and take out his tenth rib, which they'll use to bolster his spine. That'll take an hour to an hour and a half. At that point, the general surgeons will close that part while the orthopedic surgeon will go take a break.
When he comes back, Ethan will be laying on his stomach. The surgeon will take out the three or four disks in Ethan's lumbar spine. He'll use bits and pieces of the rib together with ground cadaver bone and will use it to prop up the space where they removed the discs and to straighten the spine. They say this part will take about 3-4 hours.
All told, Ethan will be in surgery about 6-8 hours. After which he'll be released to the pediatric intensive care unit. Ethan's airway is in good shape. Nonetheless, he'll stay sedated and intubated that first night. Assuming he's doing okay, they anticipate extubating him on Wednesday. Then I think it will be at least one more day in PICU before we're transferred to the surgical recovery ward. They say that he'll probably be in the hospital for about seven days.
Of course, Caleb will be with us in Seattle. He'll be spending nights back at the hotel or the Ronald McDonald House with one of us. During the day, he'll be up with us on the ward some. He'll also be doing some schoolwork with the Seattle Children's Hospital School teachers. And, my uncle Phil is coming out to Seattle primarily to help Caleb get out of the hospital and take his mind off of things. Caleb's started a list of things to do with Phil and they will probably hit the Space Needle and the airplane museum, the aquarium and do a DUCK tour of Seattle and Seattle harbor. (Thanks, Phil!)