Maria had her semi-annual evaluation this morning.
The doctor was really impressed with how much progress Maria has made since the last one, which was right before we went to Shriners in November. She admitted that in past evaluations she sometimes had to struggle and fool herself (her words) to see much progress. She was happy to see so many examples of how much better Maria interacts with the world. I suspect that getting her seizures under control is a big part of why she has developed so much.
She also said Maria’s muscles were much looser and she thought that might have been the seizures as well. Maria was probably having many mini-seizures (dozens or even hundreds per day) that kept her muscles tight.
Maria’s scoliosis is getting more pronunced and the doctor said that her ribs are starting to move out of alignment as a result. At this point it’s nothing serious but it’s one more thing that could get worse. She said that scoliosis doesn’t get better, which surprised me because I had been assuming that we could reverse some of the damage.
And we continue to fight with the DDD to get the equipment that Maria needs to keep the scoliosis from getting worse.
She recommended sending Maria to a nutritionist, which we all agree is a good idea. Her swallowing and eating are still a problem and the concern is both the calories and the actual nutrients. It would likely be a matter of adding some powders to her milk so it would be easy to keep up on.
Her height is 36″ which baffles us. That is what it has been for months at least and maybe over a year and yet she is clearly longer. She is outgrowing her current stander, her high chair, and a few other things. We watched the doctor measure her twice and agree that she did it right, but she got 36″. Weird.
Later in the day we took her to a Jin Shin Jyutsu session, which was my first chance to observe it. Debbie, the practitioner, touches Maria very lightly at two points, say on her wrist and her back. The idea is to unblock the energy flow through the body – or something like that.
I’m both open minded and skeptical toward alternative therapies. Some, like the Qi Gong, definitely did Maria some good. I may not understand how it helped, but it clearly helped. Others, like the faith healer, didn’t seem to do anything.
Since she started the Jin Shin Jyutsu all of us (Manolis, Cathy, Sue and I) have noticed numerous examples of Maria acting more in tune with the world. It seems related to vision and hearing, although I’m not sure if it’s the sensory input or the cognitive interpretation of the input that has improved. It might be coincidence, but it sure seems to be linked to her therapy sessions.
Maria starts with a new speech therapist on Tuesday. Then Cathy, Rosanne and I are going to the Hydrocephalus Conference on Thursday and get back just in time for Maria’s 4th birthday!