Hi Friends and Customers,
Since I have been so unproductive lately it's time for an update on MJ. Last November my wife Christine and I decided that MJ was getting sick too much in daycare and that she should stay home with me. I found that I got more work done than with her in daycare because she wasn't sick all the time. Once we made the decision we started looking for people to help here in my home office so that I can get caught up with all the new work I have been getting. Volunteers and Hab-Aids were doing a great job working with MJ while I worded on getting caught up. That worked great for a couple months and then one of the volunteers decided to go back to her home in Japan and a great hab-aid was offered an excellent full-time job. Various other events have made it difficult for other volunteers and helpers to pick up the load so I am doing most MJ's daytime care. It is really wonderful to spend the time with her but I feel torn between my business commitments and my responsibilities as a parent. It seems like both are being short changed.
The good news is that all the work we have been doing with MJ, and has been a lot, is paying off. We are seeing progress in many areas of development. It is so exciting to see her more comfortable with being upright and getting closer to sitting up by herself on the floor and crawling. She recently was fitted with braces for her feet and ankles and the progress has been thrilling. It appears that her legs and trunk control are more advanced than her arm control and strength It's possible that she will walk before she crawls. She is also advancing with her oral motor skills and is eating more challenging foods and forming different sounds. Still no words though.
With her being upright more and more her seizures are getting to be a big issue. They only last for a second but they happen several times a day. She often will loose head control for a moment and bang her head on whatever in in front of her. It is very difficult to see this happen but there is no way to anticipate it. We have been working on getting them under control but have not been completely successful. We are making progress and all the many therapies she is doing are helping.
In June we are going the Seattle to meet with the doctor that treated her hypsarrhythmia, for more testing. He believes that she needs one more supplement to stop the seizures but cannot figure out which one it is. The testing will give him more data. These tests in June are another reason for this letter so that you will know that I will be out of the office for about a week. I plan on doing some work that week and will be answering email and phone calls as time is available. If you have any projects that need to be address in person before that week please let me know. Finally I want to thank you for being so patient with me over the last year or so.
I have to apologize to everyone for the missed deadlines, dropped balls and generally slow progress on the projects. I am so tired of making excuses and I am praying this turns around soon, that MJ gets caught up and that I get caught up.
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