I’ve probably started and stopped this post a half dozen times already. Well before sharing the blog publicly. It’s just one of those subjects that is not only hard to cover but is so broad, it’s hard to know what scope to cover in a singular blog post.
We’ll just start like this: as of this writing, HG does not have use of his arms or his hands. He has some shoulder movement, there’s an occasional minute pinky twitch. We video and celebrate the slightest of arm raises and movements. His right side is farther along than his left, likely due to us being able to work with it more while his left arm’s fracture healed.
That’s where we currently are. Which probably reads as dire or depressing. Believe me, it sucks, and it’s depressing. It’s depressing having your son’s arms hang limp as you pick him up. Having to be aware of their placement and making sure you have them tucked up where they won’t get hung or won’t cause him any pain/discomfort. It’s depressing and torturous watching your son struggle. Seeing in his eyes that he wants to do something, but he can’t figure out how to get his arms and hands to do what he wants. It’s depressing not knowing if or when he’ll develop the use of his arms or hands. This entire ordeal is depressing if you let it be.
I say all that to bring it back around. Despite all that above. All the things that can get to you. That causes you to sit and shed a tear. All the unknowns. We’re nowhere near dire. Dire was my mindset three months ago, but we have come so far from those first few days! We’re already so far beyond what I allowed myself to think was possible in those first few days in the NICU.
When HG was born, he of course came out all twisted and clinched up. His left arm hung down and away from his body. I’ve described it as looking as if only his skin kept it attached to the rest of his body. It looked so separated from his body. I started questioning in my mind in those first few minutes what the possibility was that they’d just amputate my newborn son’s arm. His right arm was tucked up against his body with his hand clenched tight under his chin.
During those first few minutes, I thought his hands looked more like seal flippers than hands. Both of HG’s thumbs were clinched and seized up into his palms. You could only see four fingers, which were somewhat curved and very tightly pressed together. Bluntly, his hands were funky-looking and one of the scarier things for me to first see. You can tell by his “handprint” how messed up his hands were.
There we were, a newborn baby boy who looked like he would never have use of his arms, hands, legs, or feet.
That was then. Since those early days in the NICU, we’ve been working on his legs and feet, and those have been the bulk of what we’ve shared of his treatment and progress, mainly because those are things you can see clearly. Those are things that translate into pictures.
The entire time we’ve been working on his lower half, we’ve also been working on his upper half.
Since we came home, we’ve been working with HG’s arms and hands. Working on his flexibility and range of motion. With arthrogryposis, that’s a top priority. Because of the nature of his condition, his muscles and joints essentially want to be tight. They want to be seized. So, it’s a process to work with him and keep working with him.
We’ve worked him!
The first three months have been referred to us as the “golden age” for being particularly effective when it comes to stretching, even in joints that show no movement, such as HG’s arms and hands.
His flexibility and range of motion in his shoulders and especially his elbows have always been a highlight of surprise and excitement from his physical and occupational therapists. So thankfully it looks like we’ve avoided the need of an elbow release.
He is now on his second set of splints, which are helping bring his hands to a neutral position. We’re slowly working on bringing his wrists around to a more natural position. The splints also have helped with his thumb position, and we’re hoping at this point that we’ll be avoiding the need for a thumb reorientation surgery as well.
His fingers, which were once so stiff and tight they felt like they’d snap with any movement, now have at least some semblance of motion in his knuckles.
I already gave this away, but all this work is starting to show signs of hope for the future. What were once barely visible arm raises, are now beginning to be more apparent. We’ve seen some random, tiny movements in the right pinky. All his therapists seem optimistic that we’ll eventually get more hand and arm movements. So, we’ve started working more on tummy time, helping build strength in his arms. The hope right now is to have him where he’ll be able to crawl on his forearms rather than his hands and wrists.
We also work with hand movements and the feeling of textures. Anything to help stimulate his nerve receptors to help encourage development and hopefully movement.
With all the positive forward movements and momentum that we have, we do still struggle with a few hurdles.
Since we started with castings, the perception of the hands has been the hardest to overcome, and I admit that. When we first started posting photos, it was rare to see HG’s hands-on full display. That was something we had to get over. Knowing that some people are going to judge our son and make immediate assumptions regarding him. That they’re going to dismiss him, simply because his hands and arms may not look like theirs.
It’s a parent’s immediate nature to want to protect your kids, and in a way, which I admit was somewhat selfish, we were protecting him from immediate judgment. Something we may or may not have been guilty of back in the early NICU days ourselves. (I have admitted I thought my son had flipper hands)
I’ve watched as people have interacted with HG. Paying extra attention to his hands and arms. Being overly cautious and aware. Being scared that they or another person isn’t aware of his arm placement when they’d be in no different a position if he had full use of them. Missing the fact that he was smiling at them. Missing the fact that right now, he’s not aware that his arms and hands should move and be grabbing things, only aware that this person is holding him, and he’s looking up at them, ready for their attention. Their perception isn’t of this 3-month-old baby, but of a fragile thing they could hurt or break.
We also have to pull the reins back on some who will be overly optimistic and have the perception that everything is better than it is right now. Mistaking ligament movement or tight knuckles for muscles flexing, gripping, or holding. It’s a sucky thing having to tell someone they’re wrong on something you want to be true so badly.
We know we’re not there yet though.
It’s a slow process. A frustrating process. A heartbreaking process.
We’re helping our baby boy to hold a toy to have the sensation of his hand gripping, rather than having him grab our fingers.
Watching his hands fall limply to his sides, zero signs of resistance to gravity.
We’re raising our son’s arms above his head or bending his arms at the elbow and bringing his hands to his face rather than watching him suck his thumb.
Rather than wondering about who the first person he’ll reach for will be, or how long he’ll hold on to a favorite toy, we’re left wondering and hoping that he’ll one day be able to feed himself.
I’ve been brought to tears over the flex of a pinky, so small that it would have been missed if I wasn’t watching his hand at that moment.
The progress is small, but we’re progressing, and we’re already miles from where we started. This is a mountain we have to climb, without knowing how long it will take, or what is on the other side, but if our son is to have any hope of having use of his arms or hands, we have to climb.