We went to our visit with the neurologist and physiatrist yesterday as we will do every four months. We usually start out chatting with her neurologist, but today I pretty much pounced on the physiatrist to exclaim our joy over the gains Emily has made in head control and trunk stregnth in the three months she has been wearing her Dynamic Movement Orthosis. They were surprised that we got it so quickly and really happy that she is responding so well. It was so nice to have them look her over in a sitting position instead of laying on the table this time. Also nice to hear them say “Wow! Good job Emily!” From now on, I hope and imagine I will be proudly showing off Emily’s amazing gains at these visits. Before now, four months would go by and the new things to report where very very minor. Now, four months seems like a very long time and much will change in that span with Emily’s new gains in muscle tone and strength
This was the visit where we are now ready to get prescriptions for adaptive equipment. That is things like a stroller to give her better support, a bigger bath chair, a stander and a gait trainer. Some of these things can take a very long time to get, so we get the process going now. The stander will help her gain trunk strength and get her legs used to bearing weight. If we get the gait trainer that I want, a KidWalk II, she would be able to start using it pretty soon to learn how to use her legs and eventually down the road, walk. We also got an order for a Hi-low chair so she has more comfortable supported seating around the house. So we are about to have a house full of equipment!
It’s a little emotionally hard to have to order these things for her. But the recent changes we are experiencing with her, and the many wonderful therapies out there allow me to know that they are not going to be needed forever. They will just help us get her there!
We also discussed Emily’s hips, as kids with CP can have their hips dislocate over time. So we also got a baseline x-ray so we can watch and hopefully prevent this from happening. We did not stay to see the x-ray results as there was no particular concern yet. It’s just going in her file.
The neurologist checks in and makes sure there are still no seizures, which we have been told in the past, Emily is at low risk for. Every child with brain injury is at risk for seizures to develop but the area where Emily’s bleed was usually doesn’t cause seizures to develop. So far, so good! I believe the risk is higher while they are little as well. So if she makes it seizure free until she is about 3, then the risk goes down even more.
Right now, the neurologist is mainly concerned with monitoring Emily’s vision. This was the hardest part of the visit for me. The bleed affected her vision center, so we have always know there are vision issues but we have been told it was getting much better. Emily has seemed to us, to be able to see and grab at everything in her field of view. Now, with her glasses, seems to see at distances even better. So when the neurologist was discussing vision impairment and vision therapy it was a little jarring. Steve reminded me that this is her job right now since we really don’t have any other neurological concerns at the moment. The neurologist was pointing out how Emily’s eyes have trouble moving, just like the rest of he muscles in her body have trouble due to the bleed. We discussed that at this point we don’t know if her actual visual images are affected or just her ability to move her eyes. She needs lots of practice to strengthen her eye muscles. Her eyes also have more of an obvious back and forth wobble, which normal eyes do, but it should be imperceptible. She didn’t use the word nystagmus, but I think this is what Emily has. I, personally, can’t see it most of the time. Anyway, we discussed having Emily seen by the best doctor for Cortical Vision Impairment in the area, which is Dr. Christine Roman in Pittsburgh. She should be able to give us a better picture of how much Cortical VIsion Impairment (CVI) Emily has as opposed to just having trouble with the muscles. We are trying to turn these trips to Emily’s care providers into mini family vacations, so hopefully we can do a little camping or site seeing when we go see the doc.
That was about it from this visit. We just need to add more vision therapy to the daily routine and carry on!