This is TWO!

Click this link for his two year update video!

How he’s doing

Jaxson has continued to make progress with his flexibility and independence. This year, Jaxson learned to walk, as mentioned in his 17 Month Update. He has significantly improved his hand skills and can engage in play much more effectively. I remember early on feeling worried that he would never experience the same joy from imaginative play as other kids do. It hurt so much to see other babies shake rattles, suck their thumbs, give hugs, and wave hello. Now, Jax can pick up his toys, pinch with his index and thumb, point with his index finger, and press buttons with either his index finger or thumb. He is capable of so much with his hands that when someone new meets Jax, his disability isn't the first thing they notice. He's reaching higher and compensating less without arching his back as much. His movements are more controlled, and he's swinging his arms less, which indicates he is growing stronger!

Finally, and arguably his largest achievement thus far, Jaxson has started to slightly bend his elbows ALL ON HIS OWN! That is without using a table, knee, or anything to press against to bend it. THIS IS HUGE! I am really hoping that now we can start strengthening his biceps. Since Jaxson hasn't had a MRI yet, we don't know for sure if he does or doesn't have biceps. I am hoping that this tiny movement means that he does!

New Custom Splints!

Jaxson was beginning to grow out of his old splints, and one of the hinges even snapped, so we brought in another local orthotist to craft some custom splints for him for both his wrists and elbows. We chose to try local again to avoid having to drive to Shriners Greenville for them and to have the benefit of someone close by if they need adjustments. Check out this picture showing Jaxson's first professionally made wrist splints compared to his new ones!

For his wrists, we wanted to build ones that would help prevent them from pulling down and offer a good stretch while he sleeps. A new goal that we had was to have a piece that could detach from his fingers but still hold his wrist in place so that he can wear them while he plays, preventing him from folding his wrist down and putting weight on the tops of his hands instead of his palms.

These elbow splints are the best ones to date! I've been asking for a set like these since before he turned one but kept being told he was too small for the joint. These ones have a crank that clicks into place and prevents him from straightening his elbows. They also include his fingers, so he gets two stretches in one! Right now, we are rotating one elbow brace and one wrist splint while he sleeps, and swapping them each day.

Current Interventions

• Physical Therapy- Three, 60 minute sessions weekly

• Occupational Therapy- Two, 60 minute sessions weekly (Hoping to add a third session in clinic when space opens up)

• Play Therapy- One, 30 mins session weekly

• Momma is still stretching his joints for a minute each (15 mins total), five times a day

• In July, Jaxson also completed a week-long Intensive Occupational Therapy Program, which consisted of two hour long sessions, four days in a row. He also completed one aquatic therapy session, by the same OT.

• During his PT sessions, his therapists have continued to apply Kinesiology Therapeutic Tape and use an NMES machine for electrical stimulation to activate his muscles.

Passive Range of Motion

(What we can stretch him to)

• Shoulders- all the way up and out. His scapulas (shoulder blades) pop out a bit still, but overall fairly close to normal.

• Elbows- both past 90, right is better than left, but we are VERY proud to have finally passed 90 degrees! This took so much work to get here and is one of the main reasons why his surgeon/specialist doesn't recommend an elbow release surgery.

• Forearm Supination (rotating forearm)- still a little tight, but improving

• Wrists- can't bend them enough to crawl yet, but is able to grab toy cars with an open hand. This puts his wrists in a pretty typical position during play and has allowed him to get some weight-bearing in.

• Fingers- can stretch them mostly straight with only a couple knuckles slightly curved still. When bending them, most fingers can wrap around my finger, but he can't yet make a fist on his own.

Feeding Update

Jaxson has now moved away from purees and eats mostly what we eat, but with a focus on high protein for every meal and snack. We try to work in protein whenever possible to help him with his low muscle tone. We have been working on using utensils and raising them up to his mouth without bending down to feed himself. I told his therapists that one of my main goals for him is to be able to lift his hands to his mouth. Flexibility-wise, he is there, but now we need to strengthen his muscles so that he can do so on his own. For now, we have added a styrofoam block to his highchair to help him reach his mouth without bending down. In addition to this, I am still showing him how to lift with hand-over-hand feeding.

Another little fun activity that the whole family had was to be in a stroller advertisement! It has been so fun seeing the pictures pop up on instagram or facebook!

Overall, we are so extremely proud of Jaxson's progress! We have continued to see his specialist, Dr. Waters, every three months, and every time we see him, he makes sure we know how truly amazing his progress is. If we didn't do all this, none of it would be possible. It's up to us and his amazing therapist to put in the work now. Sometimes, after putting in so much work every day, I feel drained and discouraged. I plan out every minute of his day to make sure all his movements are beneficial. It can be exhausting, but then he'll do something new that he has never done before, and I'm instantly reminded why we work so hard!

If you have any questions or comments, please drop them below or shoot me an email! I'd love to chat and help in any way that I can!