Celebrating Growth: A 17-Month Update on Jaxson's Journey with AMC

How is my little man 17 months old? They really do grow up so fast!

We Have a Walker!

Jaxson has continued to make really great progress. We truly are so blessed to get to see him improve and continue to defy the odds. Since my 12 Month Update, Jaxson has progressed from butt-scooting, which he used to get around instead of crawling, to walking! I was warned from other AMC moms that walking can be a very scary time. Jaxson's wrists don't bend enough for him to catch himself. This also affects his ability to hold onto objects or walls for balance. Since his elbows are affected, this also puts him at a higher risk of broken arms if he falls on them. Over the last few months he has taken several pretty bad falls. Thankfully, no bones were broken and his injuries consisted of a few black eyes and bruises. With each passing week, Jaxson gets a little more stable and we are seeing less and less falls.

Watch me learn to Walk! Video Link

2nd Visit to Shriners for New Splints

In January we made another trip back to Shriners Greenville to get Jaxson refitted for his wrist splints that they made at his first visit there and to increase the bend of his elbow splints. We were told by our local Orthotist that he couldn't adjust the elbow splints any more. I reached out to him a few times with my concerns, but he kept telling me they were fine. This seemed strange to me and I felt like they weren't doing much so I scheduled a visit with Shriners OT department to get a second opinion. I am so thankful that we did because we actually found out that his left splint had the wrong part on it and was actually pushing to straighten his elbow rather than bend it! His left is already more behind than his right with how much it can bend, so this was very infuriating to learn. He had been wearing these for almost 3 months. That's three months of lost time, potentially setting his progress with his contracture back. I really couldn't believe it. Our local orthotist looked at them twice and ignored my concerns when I said they didn't seem to be bending his elbows.

Thank God I listened to my gut on this and thankfully Shriners was able to correct the joint and added a part to force both of them to bend more. Mission accomplished!

Baby Sister, Gia Arrived!

Another big event that happened recently was welcoming Gianna Marie to the world on February 22nd. Jaxson has been so sweet with her and gave her a hug as soon as he met her. He hugs by laying his chest and head down and kind of putting his arms around. He'll close his eyes with his head on her chest, which is the sweetest thing!

One of my biggest fears with welcoming a second child into the world was if I could continue to give the same amount of attention to Jaxson's PT and OT exercises while also giving an equal amount of attention to Gia. Taking care of Jaxson has been a full time job, and I was afraid that he wouldn't make as much progress when then baby arrived since I have been working with Jaxson all day, every day.

Now that she's here, I can proudly say that I think I'm rocking it with a little extra help from a nanny. The nanny was a must because I quickly learned that I couldn't do it all and that was OKAY! I have continued to stretch Jaxson 5 times a day for about 10-15 minutes each and in between sessions I am providing play opportunities that encourages him to lift and bend his arms and to use his fingers for fine motor skills, while also feeding Gia every few hours, pumping, cleaning bottles, cleaning pump parts, and also working on tummy time and tracking with her! Two under two is no joke!

Weekly Therapy

Jaxson is now receiving all of his sessions at home, which has been sooooo helpful since I had Gia. He has continued to receive 3 sessions of Physical Therapy, 2 sessions of Occupational Therapy, and 1 Play Therapy session each week. In March, we started MNES (electrical stimulation) to hopefully help strengthen and activate his muscles to help him with raising his arms. In the next few weeks, we are going to start Aquatic Therapy at a center in Charlotte. I hope to learn from the OT and plan to try to replicate it in our neighborhood pool.

I recently learned that there is an approach called Intensive Therapy, which consists of going to a center for 2-3 hours a day for a whole week, all by the same person to provide a more intensive intervention. Some people even do these intensives for three weeks straight. Unfortunately, intensives don't accept insurance, so its all out of pocket. I found a place in Charlotte called MOVE and signed Jaxson up for a week of OT Intensive in the end of June. I can't wait to see how this can help him!

To see how Jaxson has improved recently, watch this video!

17-Month Progress Video