October 26, 2003
We are sorry about the delay in updating this page on Natalie’s progress, as life has been extremely hectic this summer. We have moved into a new home, which has made life easier on all of us. Some of Natalie’s progress since the last update has been remarkable. We played the medicine game quite a bit this summer to get her seizures under control, and have finally found a good medicine to control them.
It has been a couple of months since her last significant seizure! We have still been fighting to control how tight she is with her muscle tone, and are venturing to the University of Kentucky to see a specialist in the field of spasticity for ideas and help. Summer school was great fun for Natalie as she was able to continue making progress with her classmates, and we feel that it has also helped her to not regress. Now regular school is in session, and she is doing really well. Her teachers have heard her laugh a few times, been kicked a couple of times, and have seen lots of smiles. Natalie is still not able to reach out on her own, sit up, or talk, but we see more of her personality come out every day. Her attitude is still in there, as she only will hold her head up when she wants to (or if we are feeding her dinner).
We are currently looking into several courses of therapies that we haven’t tried yet. One is hippotherapy, which is horse-back riding with therapists for children with disabilities. Another therapy is called the Listening program, which uses classical music to help the brain recognize different sounds, and rewire itself for those sounds. Also, a new clinic is opening locally called The Sensory Learning, INC. which uses light, sound and motion all together to help rewire the brain to recognize multiple inputs. We are excited about what the results have been with other children with this treatment, and are anxious for this clinic to open since it is so close to us.
As far as the Hyperbaric Oxygen treatments go, we have reviewed videos of Natalie before she began and since she began those treatments, and have found that she has lost some head control and has become more sensitive to light. We have done 52 treatments so far, and have not seen significant progress. As with any treatment, everything is trial and error, and some help, while others don’t. At this time, we feel it necessary to pursue other treatments and put the HBOT on the back burner for now.
Two weeks ago we had a follow up visit with Natalie’s rehab doctor and expressed our concern about how she seemed in pain, and gaggy quite a bit. A test was done on her stomach fluid, and it was determined that she was very acidic, which was causing extreme heartburn, and could cause ulcers and other problems. We have started a new medicine for acid control, and it seems to have helped greatly. Now she is all smiles, and tolerates her food better.