Xander had his appointment with his ortho doctor, Dr. D. I actually got a lot of my questions answered in regards to Xander's clubbed feet and how that works along with other aspects of his growth and development. I now have a better understanding of what we're looking at long term with Xander's feet, from a medical stand point. There's bad news and good news.
Good news: At this point, Xander's feet are functioning correctly....all the way up his calves(clubbed foot affects things all the way to the knee...which is why Xander will always have very skinny legs below the knee). What we thought might be a sign that his ankles needed support is actually proof that they do not need any type of support. In fact, after examining Xander's feet and watching him stand and take steps(holding onto me of course), Dr. D said that Xander no longer needs his braces. In fact, he does not need any type of device on his feet or in his shoes....nothing. From a medical stand point, at this moment, Xander's feet are capable of doing what they need to do in order to bear weight when Xander attempts to stand.
Bad news:
Xander will be having surgery on his feet again. It could be as early as next summer but might be able to be put off for 2 years(summer of 2011). Without using a bunch of technical terms, the basic problem is that a certain tendon in each foot has already started turning back in(tightening, actually)...causing his feet to turn in. The reason that the surgery is not necessary right now is because Xander's feet are only turned slightly....and only when he's sitting. When he stands, his feet can still correct themselves. Dr. D said that the tendon tightening(turning in) is a gradual process, and since it does not affect his feet when standing, it does not need to be corrected yet. It is possible that the tightening will happen quicker than anticipated and if so, we'll go back to see Dr. D before next summer to look at doing the surgery sooner.
Then, there was the inevitable discussion.......
Will Xander ever be able to walk independently? The simple answer is no, more than likely not. Dr. D was quick to say that there is always hope that one day, Xander will be able to stand on his own and walk. He said that he'll never say
never. But there are factors that, combined with his clubbed feet not being repaired until he was 4 years old, that will make it very hard for "one day" to come true. He said at the very least, he thinks it will be at least 2-3 years before Xander is able to stand and take steps independently....and what that time frame depends on is completely unpredictable.
He gave me a long explanation that basically confirmed what I already knew in my heart to be true. Unrepaired clubbed feet.....combined with Down syndrome......combined with the fact that Xander was in what basically amounts to a neglectful situation for the first 4 years of his life(which impacted his development even more).....and well, Dr. D said at this point, from his observations, he does not believe that Xander is capable of learning how to walk.
Now, before anyone starts blasting my doctor, let me say that we had a long conversation about this. He gave me a lot of information from a medical stand point about development. We talked about Down syndrome and how that, in and of itself, impacts the brain. We talked about the life Xander lived for 4 years(yes, the doc had reviewed Xander's history before seeing us) and how that environment impacts development in
every child....and then how it's further impacted Xander because he does have Down syndrome. Then, on top of all of that, you add in the clubbed feet. Xander didn't even have a step reflex until he was almost 5 years old.....babies have that at just a few months old.
Basically, what Dr. D said, in the nicest way he could think to say it, is that Xander's brain is not capable of processing and performing all of the tasks that must be done all at the same time in order for Xander to walk. In other words, Xander's cognitive delays impact his ability to control his body in a way that must be done in order for Xander to learn to walk. Dr. D believes that
if Xander's brain continues to develop past a certain level, he
should be able to learn to walk independently.
This is all information that I already knew. It was actually some what of a relief to finally hear it said out loud. At the same time, it made everything all the more "real", for lack of a better word.
I will say that Dr. D was very positive through the whole visit. He did say, more than once, that he thinks that Xander may one day be capable of learning to walk. But he does not think that time is coming any time soon.
Before anyone asks why we'd then do an additional surgery if Xander still can't walk....there is a reason for that too. Right now, Xander can stand with support. This helps him even though he can't walk(he can climb onto furniture, pull up to stuff, etc). If his feet turn in again, he'll no longer be able to stand. So, his feet need to remain straight in order for him to maintain the abilities that he does have at this point.
In addition to releasing Xander from the need to wear braces, Dr. D did do one other thing. He said he'd catch flack for this.....so nobody blast my doctor, ok?
Dr. D's recommendation is that Xander discontinue physical therapy.
He said that from a medical stand point, Xander does not need physical therapy any more. He does not need to do exercises or anything like that. He doesn't need any special equipment or any intervention that a therapist can provide.
Dr. D said that at this point, Xander just needs to live his life and continue to grow and allow his brain to develop naturally. He believes that Xander's natural environment(the fact that he has siblings especially) is enough stimulation for Xander. He said that at this point, there is no magic cure.....nothing that will suddenly make Xander walk. There's nothing a therapist can do.
It was a long and emotionally exhausting visit. There was so much more that I won't even go into...this is all the basics. At the end of the visit, Dr. D asked me if I was ok with everything. He said, "You've already done so much for Xander. You had to know when you brought him home that this wouldn't be easy." I told Dr. D the same thing I tell everyone when they ask me this.
The day we met Xander for the very first time, he was just a few weeks shy of 4 years old, 16 pounds, feet twisted in a way I'd never seen before in my life and cognitively very much a baby.
That day, I listened as my husband made a promise to Xander......
Even if your feet can't be fixed or you never learn to walk....even if you are never capable of more than you can do right now.....we're going to love you for who you are.That's still true almost 2 years later and walking or not walking, it always will be.
