back to school night

Monday August 1, 2014
Tonight was back to school night for the boys. They were so excited to meet their teachers. Nick was excited that Keag had his Kindergarten teacher this year. My boys are growing up so fast I can't believe that Keag is in Kindergarten this year. Nicholas loved his class and teachers. He is was happy to see a lot of his friends. Keag was a little nervous but loved going on the school bus. I can't believe how fast time is going. I'm so sad the summer is over. I am going to miss having them home all day.

school registration

Monday August 4, 2014

The boys registered for school today. I can't believe Nicholas is going into the 3rd grade and Keagan is starting Kindergarten. They were so excited to find out who was going to be in their classes and the names of their teachers. They both got their pictures taken and I can't wait to see them. I am not ready for school to start. This summer went way too fast. Both of the boys are excited to start school, but Nicholas is so worried about being bores. He learns very quick and gets so bored with all of the reviewing they do in class. Hopefully it will help with him being in the PEAK program.

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.

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.

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.

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.

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.