One Year Update!

I cannot believe I am already writing this post. It truly feels like just yesterday that Jaxson was born. There was so much unknown going into delivery. Our biggest fear was that he would come out without fingers. We prayed so much for those tiny, beautiful, 10 fingers!

I remember the days and weeks after he was born being the hardest. Not once were we mentioned the possibility of AMC during pregnancy, so processing this diagnosis while learning how to care for a newborn was the most challenging thing I have done. Since all his testing came back negative and since this didn’t correlate with club hands (what they originally thought we were dealing with), I actually had hope that it was all a fluke and that maybe he’d be born completely normal. When Jaxson arrived, we learned that was not the case as you may have read in my post, Birth/Diagnosis

I recently revisited Jaxson’s initial visit notes with Dr. Waters when he was just 3 days old. He talked about how he had no normal creases in his arms where they should bend (showing that he doesn’t). His elbows could only be bent about 30 degrees, wrists flexed down and can be flexed 30 degrees, digits in tight fist, thumbs stuck in palm, fingers flexed to a “mild degree”, arms in the pronated (palm down position), and there was no independent motor function.

The best way to show how far Jax has come is to show you through videos! Independently he can use his hands to pick up light objects, pinch and grasp, transfer objects from one hand to another, use his thumbs to press buttons, raise his arms just over half way to reach for things, and rotate his wrists and arms slightly.

Passively, we can raise both arms to his head, bend his elbows to about 90, and flex his wrists up about 20 degrees past neutral.

1 Year Video Link

Next on our journey to achieve the impossible:

• Work towards independently bending elbows more (he’s only showing slight bends here and there)

• Raise arms all the way up

• Increased wrist flexion so that he can bare more weight on them (think crawling position, being able to pull himself up with his hands, and catching himself when he falls)

Edited to add how we got here!

My other blog posts will show the full picture, but since his 9 Month Update, we have increased his sessions and I’ve updated his daily checklist, which is my personal goal sheet to try to work him to the fullest every single day. Jax is seen 3 times a week for an hour each for PT. He is seen 2 times a week for an hour each for OT. He is also seen once a week for 30 minutes for Play Therapy by his EI for Early Intervention.

We have achieved all this through stretching and targeted play! Jax has had no surgeries yet and if we are really super good, he might not need any. However, we are monitoring his progress with his elbows as these have been the most difficult joint to loosen. An elbow release surgery and possibly a muscle transfer (if he’s missing any) could be necessary. These procedures are not always successful however, so this will be a last resort if we can’t make progress before he’s two years old.

A little fun fact: After seeing Dr. Waters at 3 days old, we set the goal to stretch him 5 times a day. Since Jax is just over a year old now, that’s 1,825 stretch sessions that I’ve done!