Special Needs Kid

One of my earlier posts about Sam talked a bit about Poland Sequence and Sam's upper limb differences. I can proudly report that he has had two successful surgeries on his hand, and has fully normal use of all of his short little fingers. The first surgery was in the summer of 2011 when he was just over 1 year old, and the second was later that winter when he was about 18 months old.

The first time, the surgeon took skin from the inside of his left elbow (the same side as his hand) to graft onto the sides of his fingers where there wasn't quite enough skin when they were separated. This was the same elbow with the contracture, and I felt that messing with it any further would be a bad idea. So, the second time around, we had them take skin from the opposite side.

Side note: when babies and toddlers have surgeries on their hands or arms, they typically need to have casts over their entire bent (so it doesn't slide off) arm to keep them from chewing on and pulling out their stitches. I call it the "cone of shame", human style.

For Sam's first surgery, all stitches were covered on his left arm under the cast. The next time, since the wound from the skin graft collection site would only need a couple of weeks to heal, they just bandaged his right elbow. Well...that was a mistake. Long story short, his stitches loosened to the point that he had a gaping hole inside his elbow, and he had to be put back under general anesthesia to clean out the wound, stitch it back up and get shot up with an antibiotic just in case. So, for most of last December, Sam had bent elbow casts on both of his arms. He was also on heavy painkillers for a couple of weeks.

After all of that was over, and his casts were removed, I contacted the school district to see if they might be able to help with some of his occupational therapy for his elbow. We moved into a townhome shortly before Sam's second surgery, and we were in a new school district. Early Intervention services evaluated Sam for fine and gross motor skills, as well as a range of other developmental milestones. Even with Sam's sticky elbow, he passed gross and fine motor with flying colors. However, they discovered that he has a speech/language delay.

So, for some months, Sam was seen every other week in our home for speech therapy, and once weekly at his usual private clinic for occupational therapy. I was also taking him to Early Childhood Family Education once a week in the evening.  We weren't happy with his speech therapist after a couple of months, so this fall his therapy moved to Early Childhood Special Education during ECFE class, on Thursday mornings. He's doing well and will be re-evaluated by the school district next month.

He hasn't been in OT for his elbow quite awhile, mainly due to insurance changes and the fact that he wasn't making any progress, so we couldn't justify the cost. We tried pool therapy last spring, but it didn't seem to get much better results. Our insurance changes again after the first of the year, so we plan to try OT again then, or at least have him re-evaluated at the private clinic.

With all of that, you can see how for the first two years of Sam's life, he was more than enough of a full time job for me. Now that he's two and a half, and I'm in class with parents of other kids with some special needs, I can relax a bit and count my blessings.