Its been a long time since the last time I wrote. I have been enjoying my days with my children and taking in all the little things we often take for granted. I am so lucky to be able to stay home with them and enjoy this time with them.
In March, I had my DBS battery replaced for the first time. The surgery itself was not bad. When I came out of anesthesia, I saw the Medtronic tech, who adjusted my settings. My hand had been curled in again for some time and so it was tricky getting the settings right. I was twitching a lot and having a lot of movement in my left shoulder. They wanted to lower the settings after this surgery, to hopefully make the battery last a little longer this time. The twitching in my left side did not stop until they put the settings back up to 9Volts again, where it was before the battery change.
I left the hospital that night, with my hand still curled in and feeling dizzy. We thought this was just because of the surgery and it would go away in a few days. The dizziness got worse and I began seeing flashing lights in front of my right eye. I ended up shutting my DBS off until I saw my neurologist because I could not function.
I followed up with my neurologist and he lowered the settings to 6Volts. It took a long time to open my hand, but it is open now. They thought because the battery was new, it was stronger and more powerful so the settings didn't have to be quite as high. I have been doing great since. I do have a lot of pain in my left hand from being closed so long but I have been trying to stretch it and keep it moving so I don't lose my ability to use that hand.
In September, Hailey started kindergarten. She met the cut off by one day so she is very young but enjoying it so much. She takes the bus and loves it! She has made a lot of friends and also played soccer in the spring and in the fall. She is getting better and better with it each week. She also got glasses in March so her vision is much better! She is growing up too quickly, but she is turning into a beautiful little lady. I love spending time with her, getting pedicures together and her favorite, frozen yogurt!
Cody has been doing well. He was sick all last winter with pneumonia 4 times and 9 ear infections. He was put on a prophylactic antibiotic to stop the infections. In June, he had a furlow palatoplasty. Since then, he has been completely off his g tube. He has not been sick since (until yesterday). He is saying a few words and we increased speech to twice a week to help him even more. He also gets feeding therapy once a week and he will be starting preschool in February, when he turns 3. His eating habits are horrendous. He cries to eat 24/7. Whether he is sad, angry, happy, nervous etc. he uses food to calm himself and self regulate. Our feeding therapist is an OT who has helped him so much already in just 3 visits. She believes he has some tendancies of sensory processing disorder. We are working with her to get him on a schedule and find activities that will calm him instead of using food. He is growing and thriving and doing wonderful other then the sensory/eating difficulties.
With Cody in therapy 3 times a week, appointments in Boston monthly and getting Hailey to school every afternoon, its very hard to find time to write. So much goes through my head each day that I just need to get out. I will try to keep up with my blog more because it is very soothing for me when I write. It helps me to relax even though my kids are beating each other up in the other room at this very moment :)
Thank you for taking the time to follow my story through the most difficult days and now to follow Cody's story. Some days are difficult but in the end, its all worth it and I wouldn't trade this beautiful life I have for the world.
In March, I had my DBS battery replaced for the first time. The surgery itself was not bad. When I came out of anesthesia, I saw the Medtronic tech, who adjusted my settings. My hand had been curled in again for some time and so it was tricky getting the settings right. I was twitching a lot and having a lot of movement in my left shoulder. They wanted to lower the settings after this surgery, to hopefully make the battery last a little longer this time. The twitching in my left side did not stop until they put the settings back up to 9Volts again, where it was before the battery change.
I left the hospital that night, with my hand still curled in and feeling dizzy. We thought this was just because of the surgery and it would go away in a few days. The dizziness got worse and I began seeing flashing lights in front of my right eye. I ended up shutting my DBS off until I saw my neurologist because I could not function.
I followed up with my neurologist and he lowered the settings to 6Volts. It took a long time to open my hand, but it is open now. They thought because the battery was new, it was stronger and more powerful so the settings didn't have to be quite as high. I have been doing great since. I do have a lot of pain in my left hand from being closed so long but I have been trying to stretch it and keep it moving so I don't lose my ability to use that hand.
In September, Hailey started kindergarten. She met the cut off by one day so she is very young but enjoying it so much. She takes the bus and loves it! She has made a lot of friends and also played soccer in the spring and in the fall. She is getting better and better with it each week. She also got glasses in March so her vision is much better! She is growing up too quickly, but she is turning into a beautiful little lady. I love spending time with her, getting pedicures together and her favorite, frozen yogurt!
Cody has been doing well. He was sick all last winter with pneumonia 4 times and 9 ear infections. He was put on a prophylactic antibiotic to stop the infections. In June, he had a furlow palatoplasty. Since then, he has been completely off his g tube. He has not been sick since (until yesterday). He is saying a few words and we increased speech to twice a week to help him even more. He also gets feeding therapy once a week and he will be starting preschool in February, when he turns 3. His eating habits are horrendous. He cries to eat 24/7. Whether he is sad, angry, happy, nervous etc. he uses food to calm himself and self regulate. Our feeding therapist is an OT who has helped him so much already in just 3 visits. She believes he has some tendancies of sensory processing disorder. We are working with her to get him on a schedule and find activities that will calm him instead of using food. He is growing and thriving and doing wonderful other then the sensory/eating difficulties.
With Cody in therapy 3 times a week, appointments in Boston monthly and getting Hailey to school every afternoon, its very hard to find time to write. So much goes through my head each day that I just need to get out. I will try to keep up with my blog more because it is very soothing for me when I write. It helps me to relax even though my kids are beating each other up in the other room at this very moment :)
Thank you for taking the time to follow my story through the most difficult days and now to follow Cody's story. Some days are difficult but in the end, its all worth it and I wouldn't trade this beautiful life I have for the world.
good news
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