Coen Medical Update

So, this is a long story and I do not really know where to begin. I've documented some of Coen's recent struggles in my personal journal but I feel like I need to share some of it here for family and friends that are interested (it may be a bit impersonal, but this blog thing is a great time-saver when you genuinely want to keep everybody up-to-date).

Back in October 2007, Coen was starting to stand up along the couch. We noticed that he was always "toe-ing up" on his left side; meaning, he never fully extended his left leg and rarely bore much weight on it at all. We figured that perhaps he hurt his leg so we gave it a couple weeks and noticed that it was actually starting to become painful for him. We took him to the doctor and so began what has become an emotional ride for us as we've sought answers (and still seek them) to explain why he wasn't extending his left leg.

We've been through multiple (and what doctors considered at the time to be 'definitive') diagnoses, starting with Mild Cerebral Palsy and changing to Juvenile Idiopathic Arthritis. In the process of trying to arrive at a proper diagnosis, we've had to consider neurological damage (CP), rare genetic conditions, cancerous tumors, etc. Coen has been through multiple MRI's of the hips and brain, a "discovery surgery" on his left hip, and enough doctor appointments that he now looks doctors in the eyes and watches them suspiciously as they move their hands towards his left leg, wherein he intervenes and tries to ward them off (it's really pretty impressive).

A few months ago, after receiving quality but not "conclusive" care in Austin (which is not a slight on the physicians that we worked with, just an honest acknowledgment from them that they were not certain what was going on) we were referred to Texas Scottish Rite Hospital for Children in Dallas. If you are not familiar with the Scottish Rite hospitals (and we weren't), they are a series of pediatric hospitals funded by the Free Masons and requiring absolutely zero payment on the part of families (it's incredible). The Scottish Rite experience has been great. It is a teaching hospital that is wonderful about giving ample time to all patients and families while also training the "next generation" of physicians. There's obviously far more to the story than that, but it's enough to catch you up and allow me to move on to recent updates.

Last week, we went to Dallas for another appointment. After an initial screening and a battery of tests over the past few months, we've been referred to Scottish Rite's Arthritis Clinic where we've been working with a physician that we really like. She reviewed his recent MRI's with us. As before, the brain-scan came back "clean" (this was his 3rd brain MRI in his life). The hip MRI showed what she expected -- inflammation in the synovial membrane in the left hip joint. Basically, the left hip joint (where femur head meets pelvis) is inflamed (the reason why we were referred to the Arthritis Clinic). The only new/"scary" part of the MRI reading was that the left femoral head is starting to grow faster than on the right side (which had a completely normal MRI reading). Why? The inflammation is indicative of an autoimmune condition wherein the body is essentially pounding the joint with white blood cells to fight off what the body considers to be an infection in the area. This increases the blood supply to the area, which therefore increases the growth. She didn't focus on this with any grave concern, she just mentioned it in passing and then returned to her main message that -- "He needs to walk on that leg for 80-years; we need to control this inflammation before the joint is permanently negatively affected". Those are obviously scary words to hear, but fortunately he is still young (something we cling to).

The physician admitted that she still does not know what his root issue is ("If this turns out to be arthritis, it is very atypical"). In the absence of anything definitive (and I love her honesty), she mentioned that she personally feels like it's a case of "septic synovitis" (synovitis for sure, we're just not positive about the 'why'). The "septic" part means -- this came on via an infection. When would that infection have occurred? Well, we have pictures showing signs of this back to when he was just a few months old, so it's likely that it could have been around the time of the birth (and birth records indicate some "septic events" while he was in the NICU). She did not mention if the "septic" element makes the prognosis more or less favorable. She did seem to ooze at least a little hope that perhaps once we could get it under control, it would not return, as it may be driven by an incident as opposed to an actual "condition". Obviously, that would be wonderful.
So, how do we control the inflammation? Coen has been on relatively heavy anti-inflammatory / pain medication (NSAID) for the past roughly two months. In addition to this, we've had him on an increased dose of fish oil, optimistically banking on its natural anti-inflammatory properties. The good news is that he has shown some positive benefits, if not necessarily "progress" on the root issue. Specifically, he is in far less pain now and is able to bare more weight on his left leg (two months ago, he would stand against the couch and not even touch his left foot to the ground because any weight was too painful for his hip). The recently reduced pain has increased his use of his walker and finally enabled him to stand for a couple of seconds at a time now. Overall, he is still crawling and is unable to walk (although mentally he really wants it; just today he was longingly watching a little girl at Church walk and I asked him - "do you want to walk?" - to which he gave one of the most sincere nods ever).

So, what's next? Next up for Coen is that he is going to receive a steroidal injection directly into the synovial membrane. This sounds scary but is actually something that we've hoped for for a long time now. The oral medication that he is on now is not "local" and therefore can have some other "collateral" effects that we would love to avoid long-term. Hopefully the steroidal injection will be enough to control the inflammation and allow his leg to loosen. That's the best-case scenario (again, when you don't know the diagnosis, it's hard to accurately predict treatment outcomes). If not, we may be looking at some heavier medication. But, we really can't let our minds go there right now. It's tough. Regardless, the steroidal injection will not be enough to solve the problem of his contracted hip/leg muscles. That will require another surgery to lengthen ("uncontract") the muscles, followed by bracing and extensive physical therapy. He has a battle ahead of him, but there is hope. I don't foresee him walking at all for at least another six months and maybe even longer. Likely he will need to use a medical walker to help him with balance.

What I'm about to say next may likely sound a bit cliche, but it's as sincere as anything that I've ever written. Please know that I do not write any of what I've written above or below in a context of "self-pity" or "woe is us" or any of that. My first intent is to document this for Coen. My interchangeably second and third intents are to inform family/friends and to hopefully help others that may stumble across this page and are facing similar struggles. I don't believe in comparing trials but I do know that what we face pales in comparison to the challenges that I see even among some of my friends as they care for children with advanced cerebral palsy and autism. I do not say that to imply anything other than gratitude that Coen has the health that he has. He is an immensely blessed little boy.

For Tauni and I, there have honestly been some really positive things that have come of this experience. Our level of empathy for people with health challenges has increased an hundred fold. I can't honestly say that I ever "got it" before. A few years ago, I worked in a skilled nursing facility, which entirely opened my eyes to the plights of the elderly, but now my eyes have been opened to the plights of so many of these innocent kids. To walk the halls of Scottish Rite is a heart-wrenching and yet hopeful experience.

This experience with Coen has welded me to him in a way that I do not think I would have understood otherwise. It has changed the entire parent/child relationship for me. As any parent would understand, to see your child in pain (and have them use sign language to communicate that to you), breaks your heart. We've taught him how to sign simple words like "help" which he will use with me when he wants to use his walker. It's incredibly sweet. I'll help him pull the walker away from the wall, get himself situated and then watch him push it around the house. He looks up at me so proud of himself and I'm so incredibly proud of him as well. I'm so grateful for his insanely positive disposition and his hilarious personality.

Coen and I spend a lot of time together at night. Since Tauni is with him all day and usually helps him through his nap time (and is also feeling the stomach-churning effects of the first trimester of a new pregnancy), I try to put Coen to bed whenever possible. He falls to sleep like a normal baby, but usually struggles through the first hour or two of sleep (during naps and at night) with charley horses in his left hip/leg. He has a severe muscle contraction on the left side, as a result of his hip inflammation, which kind of "locks up" his hip/thigh area, preventing him from extending his left leg. No doctor has explained it yet (and we can't find any good treatment; trust me, we've tried), but basically what happens is - as his leg is trying to relax and fall to sleep, the muscles contract/cramp, waking him up and causing often severe pain. It's the same as being woken up by a calf cramp in the middle of the night, but he gets about 10-20 when he first falls asleep.

We have a little routine where once he is asleep, I can get him to sleep on my chest so I can attempt to hold his leg stretched for him. It doesn't solve the issue, but sometimes it helps to preemptively limit the cramp. It's a crazy thing. I am a 200-pound guy and sometimes I just can't hold it back. To see his little face writhe in pain through cramp after successive cramp is torture. But, again, it has brought us so much closer together. I am crazy in love with this little man. (Note: I started writing this blog once he was already asleep and then stopped to hold him for a little over an hour once his cramps kicked in).

For fear that what has been written above sounds overly sad (again, which is not the intent), let me end by expressing how amazing this child is. His brain is incredibly impressive to me. He doesn't know a ton of sign language (he's only almost 17 months), but he uses the signs he knows constantly (food, water, outside, finished, help, pain, and especially cheese!). He has become a great communicator and I highly recommend the use of baby sign to anybody with babies. Coen has become very mechanically-minded and insists on buckling his carseat and high-chair buckles himself. Lately, he's absolutely obsessed with Yo Gabba Gabba and Brobee especially (all of his night-time lullabies that Dad sings off-key include lyrics about Brobee now). Finally, the sweetest thing was that the other night, he had fallen asleep and woke up with a bad leg spasm. I stood up with him for awhile and thought he was asleep (couldn't see his face), so I lied down and put him on my chest. I stroked his bald head for about five minutes until I could hear him breathing deeper and then I stopped. He instantly pushed himself up and sat on my chest (eyes 90% closed). He reached out for my hand, put it back on his head, and then lied back down on my chest. Needless to say, he received quite the extended head massage that night.

We love this kid and feel insanely blessed to be his parents. Our little Coen man.