Wednesday, July 23, 2014
seizures
Aaron has been having lots of seizures. They started over the weekend and have been increasing ever since. He is also having a much longer postictal state. I am needing to stress dose him which lowers his immune system even more. It took 2 days to get his neuro to call me back and adjust his meds. ( she is out of the office for a few days and another nurse finally called me back) Dr K wants to increase his Onfi. This is so scary. This is the med that made his so sick with a low heart rate and in the hospital for over a week. We are increasing by 1/4 tab a day so hopefully his body will be able to adjust with no problems. I have to call back in a few days to let them know how he is doing so we can increase the dose slowly. My sweet little boy is so tired because of all of the seizures and very slow to respond. I am hoping the med adjustment works quickly.
Tuesday, July 22, 2014
Tae's endo appointment
Monday July 21, 2014
Tae had his first appointment with Dr R today. He was showing some signs of early puberty so Dr C referred us to the endocrinologist. Dr R did some labs and they x rayed his left wrist to make sure he is actually in puberty. Once she knows for sure she will then try and find the cause. She said it can range form a brain tumor to adrenal issues. (her bedside manner is not the best) We talked a little about the treatment which ranges from a monthly injection to something implanted under his skin. I am thinking no treatment since Dr R said it would just interfere with his height. He is already dealing with enough and I don't want to put him through anything else. Once we know for sure I will talk to Dr C just to make sure. I am very thankful for the amazing team of Drs taking care of my boys.
Tae had his first appointment with Dr R today. He was showing some signs of early puberty so Dr C referred us to the endocrinologist. Dr R did some labs and they x rayed his left wrist to make sure he is actually in puberty. Once she knows for sure she will then try and find the cause. She said it can range form a brain tumor to adrenal issues. (her bedside manner is not the best) We talked a little about the treatment which ranges from a monthly injection to something implanted under his skin. I am thinking no treatment since Dr R said it would just interfere with his height. He is already dealing with enough and I don't want to put him through anything else. Once we know for sure I will talk to Dr C just to make sure. I am very thankful for the amazing team of Drs taking care of my boys.
Friday, July 18, 2014
its not good...
Wednesday July 16, 2014
I talked with Aaron's new neuro this morning about his EEG. Her first words were "its not good, its bad..." He is still having tons of seizures. His little brain is almost constantly seizing. I was shocked. I know with Lennox Gastaut Syndrome he will always have seizures, but I honestly thought he was doing great. He is talking more and even learning animal noises. Despite how well he doing this disease is progressing. I am sad and cherishing every moment with my sweet angel.
I talked with Aaron's new neuro this morning about his EEG. Her first words were "its not good, its bad..." He is still having tons of seizures. His little brain is almost constantly seizing. I was shocked. I know with Lennox Gastaut Syndrome he will always have seizures, but I honestly thought he was doing great. He is talking more and even learning animal noises. Despite how well he doing this disease is progressing. I am sad and cherishing every moment with my sweet angel.
Saturday, July 12, 2014
picnic
Saturday July 12, 2014
We had a picnic this morning at the park. The boys loved eating breakfast by the playground. They ran up and down the huge hill and played on the playground. Aaron and Taevon loved the swings. I love being able to spend time as a family in the mornings.
We had a picnic this morning at the park. The boys loved eating breakfast by the playground. They ran up and down the huge hill and played on the playground. Aaron and Taevon loved the swings. I love being able to spend time as a family in the mornings.
another EEG
Friday July 10, 2014
Aaron had another EEG today. His neuro was concerned about him being so sleepy. He had labs to check his med levels and his Keppra was low. She increased his Keppra level, but it usually takes about 2 weeks to see any effects. Nick went with us and he was so excited. The tech was very nice to him and explained everything she was doing. She let him look at the monitors and explained what he was seeing. She even turned on the strobe light for him. He loves to go to the boys' appointments and learning about the tests. Hopefully the Dr will call soon.
Aaron had another EEG today. His neuro was concerned about him being so sleepy. He had labs to check his med levels and his Keppra was low. She increased his Keppra level, but it usually takes about 2 weeks to see any effects. Nick went with us and he was so excited. The tech was very nice to him and explained everything she was doing. She let him look at the monitors and explained what he was seeing. She even turned on the strobe light for him. He loves to go to the boys' appointments and learning about the tests. Hopefully the Dr will call soon.
Bible school
The boys went to Bible school this week. They had a great time. They ended the week with a water day. The fire department came and got the kids wet and they played with water balloons. They learned so much and I am very proud of them. We bought the CD and they sing and dance every afternoon. It is so cute!
Sunday, July 6, 2014
4th of July weekend
I love holidays!! We had a great time this weekend. The weather was perfect so Aaron was able to be outside a lot!
Friday was a family day. Friday night the boys went to the Tin Caps game and saw the fireworks. They had so much fun. Aaron loved hearing all of the fireworks at night. He didn't get very much sleep but I loved hearing his giggle.
Saturday we got up early and went to the zoo. It opened at 8am so it was perfect for Aaron. It was empty and the boys had fun. Aaron loved hearing Bill the Lion roar and he heard a pig for the first time. Taevon enjoyed being outside and seeing everything.
Sunday we got up early again and went to the playground. We have to do things early in the morning because Aaron takes his meds and naps from 10am to around 3 or 4pm. It has been so fun to be out as a family this weekend. We had a wonderful time this morning. We were the only ones at the playground for awhile. Aaron and Taevon loved the swings and the boys at the playground all to themselves. We took a walk before we left and were able to get some cute pics of the boys. This was a great weekend.
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