SkeletomuscularScoliosisFlexorsHamstrings... Oh my!

I should be napping right now. If I was able to nap (I've never really been able to sleep when it's light outside), I'm sure I'd be dreaming about warm, sandy beaches. It is a chilly, damp, cloudy sixty degrees. I have never, in my thirty-eight years, fifteen of them spent in the Pacific Northwest, experienced a Six Week Summer. I'm not a big fan.

So, since the boys are sleeping and my pineal gland is really the one in charge, I should probably consider relaxing with my headphones and new agey music. Giving myself quiet time, although sometimes difficult and, lately, almost impossible, is always - always, always - beneficial when the weight of navigating medical issues and clinic hallways seems overwhelming.

Instead. I'm blogging.

Owen is still in pain. A short break, three or four days, late last week when he seemed to be more at peace. That's all he got.

The AFOs (foot orthotics) helped to stop the spasming in his feet. The baclofen hasn't done anything just yet, but did improve his sleep for a few days. We're not quite at our target dose, but if this is the pharmaceutical solution to Owen's larger pain issues, I'll be very surprised. I do, however, think it is a good choice for long-term spasticity management.

Owen is back to only sleeping a couple of hours a night. He still has episodes of acute pain when in his stroller and is just generally, very, very uncomfortable. He arches in my arms, arches in bed, arches in his stroller. And cries. And cries. Those who know Owen, understand the significance of me talking about these behaviors outside of their normal context. The intensity, consistency, and tone are all very different. Cuddling or relaxing in his bed, listening to HIS new agey music, no longer works much of the time. Once again, the medications we have for calming him, are not working.

There is an underlying issue that we've not discovered yet. I know this. Whether or not this process of discovery results in insanity, remains to be seen, but some nights at two o'clock in the morning it feels like a real possibility. Fortunately, then, the sun comes up and for that, I am grateful.

We are now seven weeks out from when Owen became increasingly trapped inside a body that hurts and does not work.

So I have a (another) call into the orthopedics clinic at Seattle Children's Hospital. We are running out of possibilities but my hope is that we're finally getting closer to understanding what is going on since we've ruled out almost every other possibility that exists. It seems as though there are multiple issues, probably all brought on by increased spasticity and as a result of Owen's cerebral palsy. I've been spending quite a bit of time the last few days reading about skeletomuscular complications that occur as a result of cerebral palsy. Stuff I should already know intimately, but that's not "easy reading" in the evening when there's no acute issue and you just want some good fiction.

1. Right hip? Owen was diagnosed with mild subluxation of his right hip two years ago. Dr. W. in the orthopedic clinic two weeks ago was concerned about this hip, and after a thoughtful review of Owen's films from this August, suggested additional x-rays and bracing. In a subsequent follow-up visit with the orthopedic surgeon, Owen's hip was given secondary status, to the curvature of his spine and the growing rod surgery. No one is right or wrong - it's a tough issue. I was encouraged to "feel" the difference in this right hip, compared to his left hip, when at Children's Therapy Center last week (see below), while Owen was seated in his chair. Left hip - set within the socket and the musculature. The right hip - a bony protrusion. The PT there strongly believes that his hip might be the cause of significant discomfort, especially when seated. (The x-ray above is NOT Owen's but does illustrate what hip dysplasia looks like in a child.)

2. Tight hamstrings (hamstring contractures)? This is also a very common problem in children with spastic quadriplegia CP and can be both painful - even more so when the contractures are significant, the muscles are shortened (both due to CP) and when the child is in a seated position.

The hip flexors are connected to the hamstrings are connected to the calves are connected to the feet. And all of this, connected to the spine. Of course, then there is the neurology behind it all... Throw in spasticity and hypotonicity and you've got serious potential problems (or really good band names).

We decided to follow through with a recommendation we received in February to see the wonderful, compassionate, talented folks at Children's Therapy Center. There, on Wednesday, Owen was measured and casted for a TLSO (thoracolumbosacral orthosis) and a SPIO suit (the one generously given to us by our friends, the Leemans, does not fit Owen anymore). We are choosing this direction, external bracing, with the hope that we can keep Owen flexible, keep him "moving," and, when not actively moving or exercising, can keep him straight. Then, in his early teenage years, spinal fusion will most likely be necessary to stabilize the spine once it has stopped growing (around 11 or 12 years of age). We've been told by the surgeons that external bracing does not work. They may be correct, but we will explore this route first, with a careful eye to any increasing curvature.

Owen and I will be in for a two-day, inpatient stay at Swedish Medical Center (Seattle) on Monday and Tuesday. We scheduled a VEEG (24-hour video EEG) and a sleep study three months ago, for the 13th and 14th of September, to establish a baseline prior to Owen coming off of the ketogenic diet. Should he have any increased seizures as we wean him off of the diet, we'll have a "pre-wean" EEG to better understand any possible correlation. Parents are required to remain in the room at all times, 24/7, since monitoring is part of the process (I need to push a big, red button should he have any questionable episodes that might resemble seizures - no pressure, right?). Owen and I have been away so much these last few weeks and these stays are so far from home and far away from my two other guys, it's hard for me to think about doing this in just three days. Please feel free to send some cheer our way early next week. I'll be on Facebook, have my phone, access to email... I can even send out our room number if any locals want to join us for an all-nighter. Just kidding. I've got a button to push...

Xo,

S/K/O/E