We just spent another day hangin’ out at the University Hospital, making our rounds to all the departments Leeza needed to see today. Here’s what we found out…

Orthopaedics: As amazing as it seems, we are not hurting her joints when we can’t keep her in her full leg braces. Despite the fact that she can literally walk on the tops of her feet or spin her right leg 180 degrees backward (and never realize it), it’s not causing damage at this point because she’s so little. As she gains weight that will change, but for now it’s a relief. We are going to try a new leg brace system that is more rigid and will connect to her ankle braces, which is supposed to be much faster to get on than her Theratogs. We were also warned that when she’s about 7 or 8 we will likely be looking at major leg surgery that would break the leg bones and reset them so they rotate out like they should instead of allowing her legs to turn inward. Sounds horrible, but apparently it’s fairly common for kids like her and will reduce the need for leg braces as a adult. At that point she’ll also have built up enough strength to figure out what type of equipment she will likely use as an adult (walker, wheelchair or motor wheelchair).

Pediatric Specialist: We’re reworking the bowel program and trying some new meds. We have a few meds we can try to see how her system reacts before we have to move on to more invasive procedures. A J tube is still a possiblity in the future, but not until after her spinal surgery.

Neurology: The right side of her brain has no external fluid!!! It did as of 2 weeks ago. We’ve been waiting for this fluid to drain for months and suddenly it disappeared for no apparent reason. The left side still has fluid, but has also improved a little. We’re going to give her 6 more weeks to see if the left side takes care of itself. If it doesn’t, she’ll have a hole drilled to drain the fluid, we’ll wait a bit to let the brain reattach to the skull (it’s pulled away because of all of the fluid) and then we should be in a place to have the spinal surgery to detether her spinal nerves. Dr. M is sure we’ll be able to get to that sometime this year, which was very encouraging.

All in all it was a very productive day. Since we didn’t have other kids to keep up with we could walk slower and let Leeza push her herself in the wheelchair. She did really well and throughly enjoyed everyone stopping her to tell her how cool her pink chair with the flashing wheels was…and of course all the usual comments about ‘all the curly hair.’