Past Progress 0-3 years

Spina bifida details: 

Birth to 1 year:

We found out he had spina bifida when I was 19 weeks pregnant. I was induced at 39 weeks so that all the doctors would be there when he was born. He was born vaginally, we did not participate in the MOMs study as it was fairly new and we were very anxious at the thought of it. His lesion is L4.  His spina was closed the morning after his birth and because they had so little skin to work with they brought in a plastic surgeon. I believe this is a huge reason his scar looks so neat and clean. He was born with his left foot clubbed

 and had a series of casts on for the first 9 months of his life. After that he had to wear special shoes all day (picture below)

and then only at night until he was 2 to keep his club foot in the right position.  He was able to empty his bladder on his own and so he did not need to catheterize. He did not start getting constipated until we introduced formula when he was around 8 months old. We started with adding prunes and prune juice to his diet but it got so bad that he would have had to eat a diet full of prunes just to have a BM. That's when we started on miralax and had lots of diarrhea and never formed stools.

He had his shunt placed when he was 3 weeks old and didn't need his first revision until he was 2 years old, we were told we were so lucky, we didn't feel that way.  Here he is in the hospital....


At birth and for 9 months after he had no feeling beneath his knees. Once we started introducing some essential oils he slowly got feeling down his right leg, then in his foot, then his tiny toes started to wiggle (it was such a slight movement that we thought we were imagining it), over time he was actually able to bend at the ankle, that movement started out slow and gradually became bigger and bigger. His left leg stayed completely numb. In fact he broke his leg when he was just a few month old and besides the swelling we had no idea because he never cried. When we were finally able to get him in to the doctor (it was a holiday weekend) they informed us that he had fractured his leg and it was healed! We couldn't believe our baby had a fractured leg and we had no idea, we thought maybe it was a skin problem. During this phase of his life there were lots of doctor appointments and lots of occupational and physical therapy appointments. To get him to roll over, sit up unassisted, to tuck his butt in when he was standing and holding onto the coffee table (we had to work to strengthen his glutes and quads), and stand up on his own. He was around a year when we got him his first pair of AFOs.  Here is a video of my husband teaching him to stand the way that the Physical Therapist told us to teach him....

1-3 years: Carl James took his first few steps when he was 15 months old. They were possibly the sloppiest steps in the world but we were ecstatic! We were fortunate enough to catch it on tape. Unfortunately it was on my phone before smart phones came out, so it's a little grainy.

We slowly watched Carl James' walking improve. When he was around 2 years old we noticed he had a pressure sore under his pinky toe. It took time to learn that it was created from the way he walks and creates pressure on his pinky toe basically ripping the underside open. We worked diligently to bandage his toe first thing in the morning and put his shoes on as soon as he got out of bed. Nothing the wound care team told me to do worked. We eventually stopped going and treated his toe with oils (geranium, yarrow, and galabanum alternating) and herbs. Even 10 minutes with shoes off would tear that toe right back open and we would be back to square one. Extended time in the bath would emaciate the toe and we had to avoid pools while his toe was healing. It was somewhere during this time that we noticed his legs weren't turning purple anymore when I would hold him on my hip and they weren't red and splotchy. It wasn't until later (when I stopped and the red and splotchy look came back) that I realized it was the marjoram and cypress that I was rubbing on his legs when I massaged them. This was also when we noticed he was  starting to feel a tiny bit below his left knee, which I attribute to using Helichrysum and Frankincense oil. We continued to do our own little experiments to see what he could feel whether it be pressure, temperature or a sharp poke. He still lacked most feeling in his lower left leg but we could see there had been some changes right below the knee as far as sensation was concerned. Here is a short clip of him walking around 2 years old.